Support Groups M, N, O, P, Q

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Slightly Creaky does extensive research to find the links you would most likely need and provides them for you in an easy-to-find format. You can access the various categories from any of our web pages using the top or side menus. Each category has generalized headings, followed by more specific ones.

Alphabetical List by Ailment

Updated March 9, 2008

Many support groups are named for people, are generalized and provide assistance for several related conditions, or are otherwise difficult to interpret. This page provides links alphabetically based upon specific ailments. Please scroll down, use the index link, or use your browser's "find" or "search" feature to get the the area you are seeking.

In addition to support groups, we include links to informational sites on these conditions.

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This listing is the result of more than 500 hours of research. It is the property of Slightly Creaky and may not be reproduced in any form. Every attempt has been made to provide an accurate description of each organization.

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Support Groups "M"

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"M"


Quick Links:      Mental Health        Mobility      Multiple Sclerosis
Macular Degeneration Macular Degeneration Foundation, Inc.     Eyesight.org receives top ranking by all major search engines for a reason ...  It continues to be the leading resource for information concerning Macular Degeneration to a growing population of individuals affected by the disease and related low vision conditions.
Macular Degeneration Partnership       Macular degeneration is a progressive eye condition affecting as many as 15 million Americans and millions more around the world. The disease attacks the macula of the eye, where our sharpest central vision occurs. Although it rarely results in complete blindness, it robs the individual of all but the outermost, peripheral vision, leaving only dim images or black holes at the center of vision.
Macular Disease Society (UK)  The Macular Disease Society aims to build confidence and independence for those with central vision impairment.  We are the only UK charity dedicated to helping people with macular degeneration.
American Macular Degeneration Foundation (AMDF) Committed to the prevention and cure of macular degeneration and offers hope and support to those afflicted and their families. The Foundation will be a major voice in establishing the national research agenda for macular degeneration through promoting an alliance among the scientific community, government, and victims of the disease and their families to ensure the prevention and cure of the disease.
Maple Syrup Urine Disease MSUD Family Support Group    Maple Syrup Urine Disease (MSUD) is an inherited metabolic disorder, that, if untreated, causes mental retardation, physical disabilities and death.  First described as a disease in 1954, it is a rare disorder, believed to be in all ethnic groups worldwide.  The national incidence is 1 in 225,000 births.  MSUD derives its name from the sweet, burnt sugar, or maple syrup smell of the urine.  The disorder affects the way the body metabolizes (processes) certain components of protein.  These components are the three branched-chain amino acids leucine, isoleucine, and valine.  These amino acids accumulate in the blood causing a toxic effect that interferes with brain functions.           
Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
Save Babies Through Screening Foundation, Inc.    Its mission is to improve the lives of babies by working to prevent disabilities and early death resulting from disorders detectable through newborn screening. Without proper screening affected children will likely suffer mental retardation, physical disability or even death. Most affected children can lead normal, healthy lives when diagnosed and started on treatment early.
Jewish Genetic Disease Consortium    A number of genetic disorders occur more frequently in certain ethnic groups. In the Ashkenazi Jewish population (those of Eastern European descent), approximately 1 in 4 individuals is a carrier of a gene for a condition that could be severe and may result in the early death of a child.
Marfan Syndrome  National Marfan Foundation     The National Marfan Foundation is dedicated to saving lives, and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders.  Marfan syndrome is a heritable condition that affects the connective tissue. The primary purpose of connective tissue is to hold the body together and provide a framework for growth and development. In Marfan syndrome, the connective tissue is defective and does not act as it should. Because connective tissue is found throughout the body, Marfan syndrome can affect many body systems, including the skeleton, eyes, heart and blood vessels, nervous system, skin and lungs.
 Federation of Marfan Syndrome Organizations  The purposes of IFMSO are to:
• Share current, accurate information about the Marfan syndrome worldwide and facilitate international communication among medical professionals and the general public.
• Establish standards for diagnosis and treatment of the Marfan syndrome.
• Support and foster research throughout the world and facilitate communication with research centers and researchers worldwide.         
Maffucci's Syndrome American Association of Multiple Enchondroma Diseases       AAMED is THE source for news and information about bone tumor diseases, research and services for adults and children with Enchondromatosis, Multiple Enchondroma, Ollier's disease, Maffucci's syndrome, and their families.
Malignant Hyperthermia Malignant Hyperthermia Association   MHAUS is the only association in the United States dedicated to the control of malignant hyperthermia, a life-threatening genetic disorder.  Malignant hyperthermia, an event triggered in susceptible individuals by various anesthetics, strikes fast and without warning, and is a sudden and life threatening condition.
Marinesco-Sjögren Syndrome Marinesco-Sjögren Syndrome Support Group                Marinesco-Sjogren Syndrome is a very rare genetic disorder characterized by ataxia (balance and coordination problems), juvenile cataracts, generally some degree of cognitive delay, and very small stature. About 100-200 cases of MSS have been diagnosed worldwide.  
Massage Heart Touch Project     The Heart Touch Project is dedicated to the training and delivery of compassionate and healing touch to homebound or hospitalized, men, women and children. When children become ill it is often hard for them to understand that painful procedures are a necessary part of making them better or alleviating their suffering.  Providing massage in hospitals is a way for children to have a positive touch experience during their hospital stay.  Currently, Heart Touch™ volunteers are massaging infants and children who are terminally ill and in hospice care.
Mastocytosis The Mastocytosis Society   The Mastocytosis Society's is dedicated to helping patients, caregivers and medical personnel understand Mast Cell Disorders and the impact they have on patient's lives. Systemic Mastocytosis is a neoplastic disease, meaning that it involves new or abnormal cell growth. The cells involved are mast cells, which are normally contained in body tissues. Mast cells release certain mediators, or chemicals, of which one is histamine, into the body in response to certain events. People with Systemic Mastocytosis develop an increase in the number of mast cells, or they develop abnormally shaped mast cells, which may not function properly. In addition, the mast cells fail to die off when they are supposed to, further increasing the total mast cell burden. This die off is called apoptosis. Apoptosis is programmed into normal cells, but in people with mast cell disorders, the mast cells may fail to die off, resulting in an increased number of mast cells in the body. When these mast cells are triggered, they can degranulate, and release their contents all at once, or they can slowly leak their contents in response to a trigger. This can cause many acute and potentially serious symptoms.
McCune-Albright Syndrome The Magic Foundation Major Aspects of Growth In Children  (MAGIC)  is made up of more than 25,000 families. The majority of us are parents of children with growth disorders and others are affected adults.
Meniere's Disease Menieres.org    Meniere's Disease is a disorder of the inner ear associated with a change in the volume of fluid inside a portion of the inner ear called the labyrinth, which includes the membranous labyrinth and the bony labyrinth.          
Prosper Meniere Society    Our primary goal is to promote the academic dissemination and discussion of clinical research data on Ménière's disease and all aspects of inner ear dysfunction, pathophysiology, diagnosis and treatment.
Meningitis Meningitis Foundation of America We are here to help support sufferers of meningitis and their families, to educate the public and medical professionals about meningitis so that its early diagnosis and treatment will save lives, and to support the development of vaccines and other methods of preventing meningitis
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Mental Health (general) MindZone   The Annenberg Foundation Trust at Sunnylands created its Adolescent Mental Health Initiative to synthesize and disseminate scientific research on the prevention and treatment of mental disorders in adolescents. The Initiative creates books and Web materials for adolescents on topics including depression, bipolar disorder, anxiety, schizophrenia, and suicide prevention.
ARC (formerly Association for Retarded Citizens of the United States) is the country's largest voluntary organization committed to the welfare of all children and adults with mental retardation and their families.   
American Association on Mental Retardation      AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.
National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
National Alliance for the Mentally Ill    NAMI is the nation’s largest grassroots mental health organization dedicated to improving the lives of persons living with serious mental illness and their families who join together to meet the NAMI mission through advocacy, research, support, and education.        
Metachromatic Leukodystrophy MLD Foundation       The MLD Foundation serves families affected by metachromatic leukodystrophy, a terminal genetic condition.
The Evanosky Foundation    Metachromatic Leukodystrophy is a rare, genetic, degenerative, neurometabolic disorder that affects approximately one in 40,000 people (primarily children) worldwide. It is an inherited disease, but parents are typically not affected. At present, it is a disease for which there is no cure. Those affected with MLD are deficient in the arylsulfatase-A enzyme, which is responsible for breaking down fatty substances called sulfatides into harmless chemicals. A person with MLD cannot break down these sulfatides, causing them to  accumulate in the body.  This accumulation causes the destruction of myelin, which is the protective covering on the nerve fibers that enables communication between the nerves and the brain.
Microtia National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Migraine Migraine Action Association       The Migraine Action Association bridges the gap between the sufferer and the medical world by providing unbiased information on all aspects of migraine, its causes, diagnosis and treatment.       
MAGNUM Inc.   Migraine Awareness Group: A National Understanding for Migraineurs, was created to bring public awareness utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true biologic neurological disease, to assist Migraine sufferers, their families, and coworkers, and to help improve the quality of life of Migraine sufferers worldwide.
Mitochondrial Disease Children's Mitochondrial Disease Network, The Mitochondrial diseases are result from defects in the function of the mitochondrion, cells that fulfill energy requirements of the tissue.
United Mitochondrial Disease Foundation      Since 1996, the United Mitochondrial Disease Foundation has funded nearly $4 million in research toward a cure and has helped thousands of families through the family support network. UMDF supports scientific collaboration and family networking through international symposia and is building an endowment to sustain research through the millennium.
Mitral Valve Prolapse Synd. Society for Mitral Valve Prolapse Syndrome        In a normal valve the flow of blood goes from the left atrium to the left ventricle. Upon closing it prevents blood from going back into the left atrium. With MVP the flaps don't close evenly. One or both flaps collapse backwards, sometimes allowing a small amount of blood to leak through the valve. Mitral valve prolapse is a genetic disorder and seems to affect women three times more than men. It is one of the most common cardiac findings.
Mobility Mobility-Advisor.com     Mobility-Advisor.com serves as an educational guide on wheel chair options, mobility aids, disability resources, and recreational outlets that enhance the lives of individuals of all ages who need mobility assistance.
National Mobility Equipment Dealers Association           Known internationally  as an organization committed to ensuring quality and professionalism in the manufacturing and installation of safe and reliable mobility equipment in vehicles for drivers and passengers with disabilities.
Wheel Me On     The organization promotes activity and unity of all Americans and strives for greater access in society. Web Pages provide education through informative articles to assist everyday living for people with or without disabilities.
Accessible Aviation International, Inc.      Accessible Aviation provides access to flight instruction for normally-abled and disabled people.    
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Mood Disorders National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
Movement Disorders Worldwide Education and Awareness for Movement Disorders WE MOVE is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web.   
Mucolipidosis Jewish Genetic Disease Consortium    A number of genetic disorders occur more frequently in certain ethnic groups. In the Ashkenazi Jewish population (those of Eastern European descent), approximately 1 in 4 individuals is a carrier of a gene for a condition that could be severe and may result in the early death of a child.
Moebius Syndrome Moebius Syndrome Foundation       Moebius Syndrome is a rare disorder characterized by lifetime facial paralysis. People with Moebius Syndrome can't smile or frown, and they often can't blink or move their eyes from side to side. In some instances, the syndrome is also associated with physical problems in other parts of the body. The Moebius Syndrome Foundation is a nonprofit organization started by parents and people with Moebius Syndrome. We've come together to do what we can to fight back - by spreading the word among the medical and lay communities and by supporting research into the causes, treatments, and possible cures for Moebius Syndrome.
Moebius Warriors International    Moebius Syndrome is a very rare disorder characterized by lifetime facial paralysis. People with Moebius Syndrome can not smile or frown. In many cases, they can not blink and have no lateral eye movement. The syndrome can also be associated with physical problems in other parts of the body.           
Molluscum contagiosum WebMD - Molluscum contagiosum page: Molluscum contagiosum is a viral skin infection that causes either single or multiple raised, pearl-like bumps (papules) on the skin.
Mowat-Wilson Syndrome MW Parents   Mowat-Wilson Syndrome is a mental retardation syndrome usually associated with multiple health defects and recognizable facial properties caused by a genetic mutation. The major health defects include Hirschsprung's Disease, intellectual disabilities, seizures, congenital heart disease, Agenesis of the Corpus Callosum, male genital abnormalities and smaller than normal heads.  Facial properties include prominent narrow chin, open mouth, cupped ears with protruding lobes, broad nasal bridge with rounded nasal tip, and wide set eyes.
Mucopolysac-  charidoses National MPS Society    The National MPS Society exists to find cures for MPS and related diseases. We provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases.  Mucopolysaccharidoses (MPS) and related diseases are genetic lysosomal storage diseases (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.           
Multiple Chemically Sensitivity MCSurvivors Compiled in 1996 in an attempt to organize the growing body of information and resources on multiple chemical sensitivity (environmental illnesses).
Multiple Hereditary Exostoses  The MHE Research Foundation     The severity of Multiple Hereditary Exostoses  varies from family to family and patient to patient and can cause numerous problems, including: compression of peripheral nerves or blood vessels; irritation of tendons and muscles resulting in painand loss of motion; skeletal deformity; short stature; limb length discrepancy; chronic pain and fatigue; early onsetarthritis. General rule of thumb is that when an exostosis / osteochondroma is surgically removed that if it does not grow back within six months, then if sighted again this would be a new exostosis / osteochondroma.          
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Multiple Sclerosis Multiple Sclerosis Foundation       As a predominantly service-based, non-profit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs. We strive to help make A Brighter Tomorrow by supporting research into its cause and cure as well as investigations of various medical and complementary treatment options. The scope of our services goes beyond that of a clearinghouse of pamphlets. Our priority is to serve with empathy, resourcefulness, and responsibility. We are here to listen, assist, and empower. 
Montel Williams MS Foundation    The Montel Williams MS Foundation was established to further the scientific study of MS in October 2000. The goals of The Montel Williams MS Foundation are to provide financial assistance to select organizations and institutions conducting the most current research, to increase allocations for research from the federal government, to raise national awareness about MS, and to educate the public.
Myelin Project    The Myelin Project aims to accelerate research on myelin repair. Myelin can be destroyed by hereditary neurodegenerative disorders such as the leukodystrophies, and by acquired diseases such as multiple sclerosis. All together, demyelinating diseases affect more than two million people worldwide.     
Betaseron Champions of Courage Betaseron Multiple Sclerosis Champions of Courage is founded on the philosophy that quality health care, combined with a positive attitude and the support of others, can be empowering forces that enable people with MS to enhance their quality of life. 
Consortium of Multiple Sclerosis Centers            To be the preeminent professional organization for Multiple Sclerosis healthcare providers and researchers in North America, and a valued partner in the global MS community. Our core purpose is to maximize the ability of MS healthcare providers to impact care of people who are affected by MS, thus improving their quality of life.         
Destination Cure: The Race Against M.S.  We are a non-profit organization dedicated to raising money and awareness for Multiple Sclerosis (MS). A prominent researcher in the field has commented that money from Destination Cure is like a speed boat allowing researchers to switch gears quickly and pursue certain areas of interest in their research vs. money granted by larger organizations which is more like a aircraft carrier - while large in size, it does not provide flexibility sometimes needed in research.
National Multiple Sclerosis Society  The National MS Society is committed to building a movement by and for people with MS that will move us closer to a world free of this disease.
Multiple System Atrophy Worldwide Education and Awareness for Movement Disorders    WE MOVE is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web. 
Munchausen Syndrome Mothers Against Munchausen Allegations           Begun in response to the fast growing number of false allegations of Munchausen Syndrome by Proxy. Parents are being accused of making their own children ill. Increasingly, families across America, Britain, Australia, Canada and New Zealand are being destroyed by doctors and other professionals who make false and even malicious allegations against desperate mothers of chronically/critically ill children.
AsherMeadow Munchausen Syndrome by Proxy Munchausen's Syndrome is a recognized psychiatric disorder. The American Psychiatric Association's Diagnostic and Statistical Manual of Disorders describes it as the "intentional production of physical symptoms."  The term "Munchausen's Syndrome by Proxy" was coined in a 1976 report describing four children who were so severely abused they were dwarfed.  In 1977, Roy Meadow described a somewhat less extreme form of child abuse in which mothers deliberately induced or falsely reported illnesses in their children. He also referred to this behavior as MSBP. Tragically, MSBP victims are usually children, and the perpetrators are almost always parents or parent substitutes. If and when victims are hospitalized, they may be subjected to multiple, and at times, dangerous diagnostic procedures that invariably produce negative or confounding results. When the victim and abuser are separated, however, the victim's symptoms cease. When confronted, the abuser characteristically denies any knowledge of how the child's illness occurred.         
Muscular Dystrophy Muscular Dystrophy Association USA        MDA is the world's largest non-governmental sponsor of research seeking the causes of and effective treatments for neuromuscular diseases, sponsoring some 400 research projects annually.
Muscular Dystrophy Campaign       (UK) The Muscular Dystrophy Campaign is the only UK charity focusing on all muscular dystrophies and allied disorders
Muscular Dystrophy Family Foundation    You don't have to face muscular dystrophy alone. Each year, hundreds of people with a neuromuscular disease, and their loved ones, turn to the MDFF for support. We offer comprehensive support programs to ensure clients' medical and emotional needs are taken care of. Our medical directors and case managers will help you through every stage of the process. And, the MDFF is the only agency who's mission is to fund adaptive equipment. From wheelchairs to van lifts to communication devices and beyond, we can help you get the equipment you need to live with No Boundaries.   
Facioscapulohumeral Muscular Dystrophy Society         The Facioscapulohumeral Muscular Dystrophy Society was organized in 1991 to fund, encourage and promote scientific and clinical research on FSHD.  The FSH Society is a world leader in combating muscular dystrophy.  FSHD is the second most prevalent adult muscular dystrophy affecting men, women and children.  It occurs with a frequency of 1/20,000 in the population and may be three times higher due to misdiagnosed cases. The majority of cases of FSHD are caused by a genetic defect or deletion on chromosome 4.  FSHD is genetically autosomal dominant meaning that a child of either sex has a fifty percent chance of inheriting the genetic defect from an affected parent.  Thirty percent of new FSHD patients have no prior family history and are a result of a congenital spontaneous genetic mutation.  Once present, FSHD is genetically transmissible. 
Parent Project Muscular Dystrophy    Parent Project Muscular Dystrophy’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education and compassion.
Mutism AboutOurKids.org: Selective Mutism        Those that have worked with selectively mute children have encountered wide variations in their social actions. Some children enjoy contact with others and will play easily, but remain silent. Some have a close friend who often speaks for them by interpreting gestures. Others find all aspects of social situations uncomfortable and do not participate at all. Whatever form the condition takes, it can persist. There are children in the 2nd, 3rd, and 4th grades who have never spoken in school. There are students in high school who have not uttered any or no more than a few words in a school setting. As you can imagine, the condition can have dramatically negative effects on social functioning.
Quiet Room   Selective Mutism is an uncommon problem in which children who are able to speak in some situations (at home) become mute in other situations (in school). These children are not defiant or oppositional, they need help, not punishment. This is a page devoted to helping parents find resources and help for their children who are selectively mute.
Selective Mutism Foundation (SMF)         Our mission, as conscientious co-founders, is to promote further  research, advocacy, social acceptance, and the understanding of Selective Mutism as a debilitating disorder.    
Selective Mutism Group      We have come together to form a community to help one another and our children.  We share experiences and knowledge, fulfilling our mission to promote public awareness, to research and educate about Selective Mutism, and to speak out for our children who can’t speak for themselves.        
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Myalgic Encephalomyelitis National ME/FM Action Network       is a Canadian organization dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through education, advocacy, support, and research.The Network seeks to effect positive change in the attitudes, policies, and practices of government, medical governing bodies, business, the media, and the general public.    
Myasthenia Gravis Myasthenia Gravis Foundation of America (MGFA)         The Myasthenia Gravis Foundation of America (MGFA) is the only national volunteer health agency dedicated solely to the fight against myasthenia gravis. Myasthenia Gravis comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.  
Myelodysplastic Syndromes Myelodysplastic Syndromes Foundation  The MDS Foundation is a multi disciplinary, international organization devoted to the prevention, treatment, and study of the myelodysplastic syndromes. The organization is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases.
Myoclonus Worldwide Education and Awareness for Movement Disorders WE MOVE is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web.   
Myositis Myositis Association of America     The mission of The Myositis Association is to find a cure for inflammatory and other related myopathies, while serving those affected by these diseases.  Myositis is the general term used to describe swelling of the muscles. Injury, infection, and even exercise can cause muscle swelling. The swelling will go away once the injury or infection is treated, or once you rest your muscles from exercise. Certain medicines can also cause some muscle swelling that goes away once you stop taking the medicine.      
Myositis Support Group      This is the largest Myositis Support Group on the Internet offering a place to learn more about the mysteries of a Myositis disease and meeting other individuals who have been diagnosed with one of the diseases:
Myotonic Dystrophy International Myotonic Dystrophy Organization  Myotonic dystrophy is a rare disease with an incidence of about one in 8000. Myotonic Dystrophy  is known as a multisystem disease. That means that the various types of tissue and organs are affected. Thus, the disease may affect the eyes, heart, and muscles.
Myotubular Myopathy Myotubular Myopathy Resource Group     Myotubular Myopathy is a family of rare, inherited diseases. Manifesting itself as a defect in the cell structure of voluntary muscles, it causes low muscle tone and, in most forms, is usually apparent at birth. Affected children have diminished respiratory capacity and are often partially or totally ventilator dependent.
Myeloproliferative Disease MPD-Support-L     Myeloproliferative disorders, or MPD, are a group of blood diseases that affect production of blood cells in the bone marrow. MPDs are characterized by the over-production of certain types of cells, particularly red blood cells (which carry oxygen), platelets (which assist in blood clotting) and white blood cells (which fight disease). MPD can strike at any age and have no known cause. Symptoms, prognosis and progression vary depending on the patient's age, health and type of disease. Some patients may have slowly progressing disease that may not require any treatment beyond careful monitoring, while others may progress to more advanced stages or acute myelogenous leukemia.
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Support Groups "N"

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"N"

Quick Link:     Neuropathy

Nager Syndrome National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Foundation for Nager and Miller Syndromes    These syndromes effect one's ability to see, hear, breath, eat, walk, talk and write.    
Nail Biting Pickaderms    Pickaderms is for people who have skin picking problems on any part of the body, and includes nail and cheek biting. This disorder is more common than you think. Pickaderms is an unlisted, private, restricted list open only to people (and parents of children) who pick or bite at their skin.
Nail Patella Syndrome Nail-Patella Syndrome Page    Nail Patella Syndrome is a rare genetic disorder involving nail and skeletal deformities (among a host of other related anomalies) that occurs in approximately 2.2 out of every 100,000 people. It is transmitted as a simple autosomal dominant characteristic in the ABO blood group. It also means that there is no such thing as an unaffected carrier, and NPS CAN NOT skip a generation.
Neonatal Diseases NOMID Alliance         The NOMID Alliance is the foundation for Neonatal Onset Multisystem Inflammatory Disease, also known as Chronic, Infantile, Neurological, Cutaneous and articular Syndrome, Muckle-Wells Syndrome, and Familial Cold Autoinflammatory (or Urticaria) Syndrome
Narcolepsy Narcolepsy Internet This email-based discussion group is a distribution list for people with narcolepsy, their partners and families, and care-providers for those who suffer from narcolepsy. Its charter is to act as an electronic support group and a place for dissemination of information about narcolepsy. We discuss things like treatments for narcolepsy, new research, coping with narcolepsy, and simply how it feels to live with narcolepsy.
Narcolepsy Network Our members are people who have narcolepsy or related sleep disorders, such as Idiopathic Hypersomnia, their families and friends, and professionals involved in treatment, research, and public education regarding narcolepsy.
Necrotizing fasciitis National Necrotizing Fasciitis Foundation (NNFF)          Necrotizing fasciitis is a bacterial infection. This bacteria attacks the soft tissue and the fascia, which is a sheath of tissue covering the muscle. NF can occur in an extremity following a minor trauma, or after some other type of opportunity for the bacteria to enter the body such as surgery. The Group A Strep infection (flesh eating bacteria) is most common with minor trauma. A mixed bacterial infection is often the cause after surgery. We can personally tell you about people who developed NF after a C-section, after abdominal surgery, after scratching a rash, after giving birth, from a tiny scratch, after bumping a leg with a golf bag, after a friendly punch in the arm from a buddy, after a little cut on the finger, after a cut on the foot, after a rug burn, after having a routine blood draw in a physical exam, after a broken arm, and after a broken leg, and from no known trauma at all.  
Neuroblastoma Children's Neuroblastoma Cancer Foundation   Through our experience with neuroblastoma and network of families and medical professionals, we are committed to use our experience as a tool in supporting the needs of the children and their families and provide funding to the medical community for new and advanced research studies.
Neuroblastoma Children's Cancer Society    A group made up of volunteers, many of whom have children or relatives who are victims or survivors of this disease. Our organization is an advocate for the children who suffer from neuroblastoma and is dedicated to serving as a support center for their families. The primary focus of the organization is to raise money to assist local research in neuroblastoma cancer, and to raise national awareness to focus additional research and funding until a cure can be found.
Neurofibromatosis National Neurofibromatosis Foundation   Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.
Neurofibromatosis, Inc.       NF, Inc. is a charitable organization whose mission is to create a community of support for those affected by NF, through education, advocacy, coalitions, and supporting research for treatments and a cure.     
Neurogenic Bladder Pull-thru Network     The Pull-thru Network is a volunteer-based organization dedicated to providing education, information, support and advocacy for those individuals, and the families of those individuals, who are affected by any congenital anorectal, colorectal or urogenital disorder and any of the variety of related diagnoses.  
Neuropathy Neuropathy Association, The  Peripheral Neuropathy, also known as Peripheral Nerve Disease, is one of the most common diseases most people have never heard of (15-20 million Americans have peripheral nerve disease). Caused by deterioration of the peripheral nerves, neuropathy disrupts the body’s ability to communicate with its muscles, organs and tissues. Neuropathy is like the body’s wiring system going haywire, causing unusual or unpleasant irritations including tingling, burning, itchiness, crawling sensation, dizziness, clumsiness and more. If ignored, as they too often are, these neuropathy symptoms can lead to numbness at one extreme to unremitting pain at the other. However, if diagnosed and treated early, peripheral neuropathy can often be controlled
Hereditary Neuropathy Foundation     Dedicated to finding a cure for Charcot-Marie-Tooth disease while providing support and services for those living with CMT and their families.
Peripheral Neuropathy Trust          (UK) Neuropathy is a common condition. It can often cause great distress and is sometimes even disabling. When you consider that you could not even move a muscle without your nervous system you can perhaps understand why the proper functioning of this vast communications network is so important to each one of us. Damage to this network of nerves may be caused in many ways and some of the cause are mentioned in the right hand column of this page. One nerve only may be affected, several nerves, or in some cases the damage may be more widespread. Although there are many causes of PN they produce many common symptoms: muscle weakness, numbness, and abnormal sensations such as burning, tickling, pricking or tingling, may be experienced. Pain in the arms, hands, legs or feet may also occur. Unfortunately it is not always possible to discover the underlying cause of the damage to the nerves.
Neutropenia Neutropenia Support Assoc. Inc    Neutropenia is a blood disorder you don't often hear about, but it can affect anyone. Some people are born with it. It can happen after a viral infection, or can be drug induced. Some offending agents include some antibiotics, antithyroid agents, tranquilizers, anti-inflammatory agents, antirheumatics, sedatives etc. Exposure to certain poisons can also cause Neutropenia.
Niemann-Pick Disease National Niemann-Pick Disease Foundation, Inc.                        The mission of the Foundation is to support and promote research to find a cure or treatment for all types of Niemann-Pick Disease and provide support services to affected individuals and families.  Niemann-Pick Disease ("Niemann-Pick") is actually a term for a group of diseases which affect metabolism and which are caused by specific genetic mutations.  
Ara Parseghian Medical Research Foundation    The Ara Parseghian Medical Research Foundation, a volunteer, nonprofit corporation, funds research projects that will lead to a treatment and cure for Niemann-Pick Type C disease.         
Jewish Genetic Disease Consortium    A number of genetic disorders occur more frequently in certain ethnic groups. In the Ashkenazi Jewish population (those of Eastern European descent), approximately 1 in 4 individuals is a carrier of a gene for a condition that could be severe and may result in the early death of a child.
Non-Hodgkin's Lymphoma Non-Hodgkin's Lymphoma Support     The lymphatic system is part of the body's immune defense system. Its job is to help fight diseases and infection. The lymphatic system includes a network of thin tubes that branch, like blood vessels, into tissues throughout the body. Along this network of vessels are small, bean-shaped organs called lymph nodes. Clusters of lymph nodes are found in the underarms, groin, neck, chest and abdomen. Lymphatic tissue is also found in other parts of the body, including the stomach, intestines and skin. Like all types of cancer, lymphomas are diseases of the body's cells. Healthy cells grow, divide and replace themselves in an orderly manner. This process keeps the body in good repair. When cells in the lymphatic system grow abnormally, they divide too rapidly and grow without any order or control. Too much tissue is formed, and tumors begin to grow. The cancer cells can also spread to other organs.
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Quick Link:     Osteoporosis

Obsessive Compulsive Obsessive Compulsive Anonymous (OCA)     OCD is characterized by recurrent, unwanted and unpleasant thoughts (obsessions), and or repetitive, ritualistic behaviors, which the person feels driven to perform (compulsions), people with OCD know their obsessions and compulsions are irrational or excessive, yet find they have little or no control over them.
Awareness Foundation for OCD and Related Disorders            Provides speakers and resources for OCD
Obsessive-Compulsive Foundation  The Obsessive-Compulsive Foundation (OCF) is an international not-for-profit organization composed of people with obsessive compulsive disorder and related disorders, their families, friends, professionals and other concerned individuals.
Joshua Center    Supports programs designed to improve the lives of individuals and families living with Tourette Syndrome, Asperger Syndrome, Obsessive Compulsive Disorder and their Associated Disorders through research, education, social and clinical programs.           
National Mental Health Association Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives
Oculo-Dento-Digital Dysplasia Oculo-Dento-Digital Dysplasia Support Group   Oculo-Dento-Digital Dysplasia is a rare disorder that may be inherited or caused by a new change in the gene that occurs for no apparent reason. Major symptoms are webbing of the forth and firth fingers, and abnormally small transparent part of the eye, a slender nose with narrow nostrils, underdevelopment of the outer flaring wall of each nostril, defective enamel and dry hair that grows slowly.
Ollier's Disease American Association of Multilple Enchondroma Diseases       AAMED is THE source for news and information about bone tumor diseases, research and services for adults and children with Enchondromatosis, Multiple Enchondroma, Ollier's disease, Maffucci's syndrome, and their families.
Organic Acidemia Organic Acidemia Association  Organic acid disorders are a group of rare inherited conditions caused by enzymes that do not work properly. A number of enzymes are needed to process protein from the food we eat for use by the body. Problems with one or more of these enzymes can cause an organic acid disorder. People with organic acid disorders cannot break down protein properly. This causes harmful substances to build up in their blood and urine. These substances can affect health, growth, and learning.                       
Osteogenesis Imperfecta Osteogenesis Imperfecta Foundation   Osteogenesis Imperfecta, commonly known as the "brittle bone" disorder-- is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. A person with OI may break a rib while coughing, or a leg by rolling over in their sleep. OI has been documented in all ethnic groups, and affects a person throughout their lifetime.
Osteogenesis Imperfecta Child Advocacy   Osteogenesis Imperfecta, also known as Brittle Bone Disease, is a heritable connective tissue disorder. The most common result is unstable bones that fracture under unlikely conditions in comparison to people with normal type I collagen. If the collagen framework is defective, the bone is weak and not resilient enough to withstand motion and maintain strength.
Osteoporosis Osteoporosis Education Project    Osteoporosis Education Project is dedicated to exploration of the full of the human potential for optimum bone health. Our mission is to further research on, and awareness about, the nutritional and lifestyle factors influencing bone health development, maintenance and regeneration.
National Osteoporosis Foundation       NOF’s Mission’s is to prevent osteoporosis, to promote lifelong bone health, to help improve the lives of those affected by osteoporosis and related fractures, and to find a cure. Established in 1984, the National Osteoporosis Foundation (NOF) is solely dedicated to osteoporosis and bone health.    
Osteoporosis Awareness Osteoporosis is the medical term for a condition characterized by bone fragility, pain, fracture, disability, and death associated with fracture complications.  We are dedicated to providing useful, timely, accurate, and easily understood information on a wide range of healthcare topics. This site is provided free of charge, requiring neither registration nor submission of any personal information to view or use the information.
International Osteoporosis Foundation (IOF)      Osteoporosis is a disease in which the density and quality of bone is reduced, increasing the risk of fracture. It affects around one in three women and one in five men around the world.      
Ostomy Issues United Ostomy Association, Inc.     UOAA is a national network for bowel and urinary diversion support groups. Its goal is to provide a nonprofit association that will serve to unify and strengthen its member support groups, which are organized for the benefit of people who have, or will have intestinal or urinary diversions and their caregivers.
Oto-Palatal-Digital Syndrome Oto-Palatal-Digital Syndrome Family Resource Network           Oto Palatal Digital Syndrome is a very rare syndrome that mainly affects males. There are very few cases of OPD known, about 20-30 in the world. The label Oto Palatal Digital simply describes the characteristics of the syndrome. Oto refers to the conductive hearing loss associated with OPD, palatal refers to the cleft soft palate which is common and digital refers to the abnormalities of the fingers and toes of an affected child.
Ovarian Cancer Ovarian Cancer National Alliance  The Ovarian Cancer National Alliance is a patient-led, organization uniting ovarian cancer activists, women's health advocates and health care professionals in the effort to increase public and professional understanding of ovarian cancer and to advocate for more effective diagnostics, treatments and a cure. Key activities include an annual national conference, a public education program targeted to women and primary care physicians, and training programs to help survivors become effective advocates and spokespeople for the disease.
National Ovarian Cancer Coalition     Our mission is to raise awareness and promote education about ovarian cancer. The Coalition is committed to improving the survival rate and quality of life for women with ovarian cancer.  
National Ovarian Cancer Association (Canada)  The National Ovarian Cancer Association has undertaken some key initiatives that have dramatically contributed to the advancement and understanding of the issues surrounding ovarian cancer in Canada. Our groundbreaking programs, our support of scientific research and our nationwide awareness campaigns have changed the face of the disease, turning it from a "whisper" to a "roar".       
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Quick Links:     Pain Management     Paralysis     Parkinson's Disease     PTSD
Pachyonychia Congenita PC Project     Pachyonychia Congenita Project has developed this website as a tool for PC patients, their family members and friends, as well as for doctors, clinical researchers, other medical professionals and schools. A rare, hereditary, autosomal dominant palmoplantar keratoderma that can affect the nails, skin, mouth, hair, larynx, and eyes.
Paget Disease Paget Foundation for Paget's Disease of Bone and Related Disorders    (Canada) Here you will find a wealth of accurate and reliable information on Paget's disease of bone, primary hyperparathyroidism, fibrous dysplasia, osteopetrosis (not the common disease osteoporosis) and the skeletal complications of cancer. (Please note that this website does not include information on Paget's breast disease.) As the premier organization in the United States addressing these conditions, the Foundation is dedicated to providing useful information for patients, health professionals and researchers. 
National Association for the Relief of Paget's Disease (UK)      The charity was founded in 1973 with the following aims: to offer support and information to Paget's disease sufferers; to sponsor research into the causes and treatment of the disease; and to raise awareness of the disease among the medical profession and the public
Pain Management American Pain Foundation, Inc.      Founded in 1997, the American Pain Foundation is an independent organization serving people with pain through information, advocacy, and support. Our mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.           
American Pain Society         The American Pain Society is a multidisciplinary community that brings together a diverse group of scientists, clinicians and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering.
American Chronic Pain Association           Our mission is to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain; to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain; and to offer support and information for people with chronic pain.
Friends International Support    Friends International is a friendly cyber-community for people with chronic pain, FMS, CFS, ME and/or back pain. We are offering support and information on chronic pain, FMS and CFS symptoms, treatment and research.  
Action On Pain  (UK) Action on Pain takes an active role in providing advice and support to both people living with pain and those affected by it's intrusive effects on daily life. Working closely with other organisations both in the UK and Internationally, the Chairman strives to raise the profile of pain with politicians, NHS Managers and health professionals.
National Pain Foundation    An on-line educational and support community for persons in pain, their families and physicians. Your source for treatment options and pain information that is peer reviewed by leading pain specialists.           
Chronic Pain Rehabilitation Program        The Chronic Pain Rehabilitation Program is an award-winning, comprehensive, inpatient, chronic pain treatment program that helps veterans with chronic pain cope with their condition.
Pancreatic Diseases National Pancreas Foundation, The   To support the research of diseases of the pancreas and to provide information and humanitarian services to those people who are suffering from such illnesses.
Ronald S. Hirshberg Pancreatic Cancer Foundation      Our ultimate goal is supporting the ongoing efforts to find a cure for this disease. Now in our tenth year, the Foundation?s dedicated efforts have significantly raised awareness and understanding about pancreatic cancer, a disease that continues to be one of the most fatal and least funded of all cancer types. Our continued funding of basic and translational research is our chance to offer life extension, better treatment options and, eventually, a cure.
Pancreatitis Supporters' Network (UK) The Pancreatitis Supporters' Network provides medical information and support for sufferers of the condition called pancreatitis. On this site there is a database of medical information, advice for sufferers and carers and a pen pals network.
Panic Attacks Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
Paralysis American Paralysis Association      There are an estimated 50 million Americans affected by diseases or disorders of the spinal cord and brain. The list of disorders includes the following: spinal cord injury, memory loss, addiction, schizophrenia, learning disability, depression, violence, stroke, brain injury, dementia, suicide and many others. More than 90% of the American population has experienced or will experience the effects of a brain-related, mental, emotional or behavioral, disease, disorder or injury at some point in their lives.     
Christopher Reeve Paralysis Foundation (CRPF)           The Christopher and Dana Reeve Paralysis Resource Center is your one-stop connection to information on paralysis. 
Christopher and Dana Reeve Paralysis Resource Center        The Christopher and Dana Reeve Foundation Paralysis Resource Center promotes the health and well-being of people living with a spinal cord injury, mobility impairment and paralysis by providing comprehensive information, resources and referral services.       
Periodic Paralysis Association       The Periodic Paralysis Association was founded to foster awareness of the periodic paralyses, promote science-based information regarding this class of disorder.  
Paralysis Project of America    The Paralysis Project of America was founded by a group of concerned parents whose children were injured in accidents. The Paralysis Project funds novel lines of Scientific Research to assist those suffering from Spinal Cord Injury and Paralysis. Scientific Grants are awarded to researchers based on the funds made available from the Paralysis Project's fundraising activities. The mission of Paralysis Project is to accelerate progress toward finding a cure for paralysis caused by spinal cord injury.        
Paralyzed Veterans of America   works to maximize the quality of life for its members and all people with SCI/D as a leading advocate for health care, SCI/D research and education, veterans’ benefits and rights, accessibility and the removal of architectural barriers, sports programs, and disability rights. We are the only Congressionally chartered veterans organization dedicated solely to serving the needs of SCI/SCD veterans.
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Paratuberculosis – see Crohn's disease
Parkinson's Disease National Parkinson Foundation     NPF is the largest and oldest national Parkinson foundation in the United States. NPF supports research, patient care, education, training, and outreach.
Parkinson's Disease Foundation    The Parkinson's Disease Foundation is a leading national presence in Parkinson's disease research, education and public advocacy. We are working for the nearly one million people in the US living with Parkinson's by funding promising scientific research and supporting people with Parkinson's, their families and caregivers through educational programs and support services.        
Worldwide Education and Awareness for Movement Disorders WE MOVE is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web. 
Parry-Romberg Syndrome National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Patau Syndrome Living with Trisomy 13    This site focuses on bringing together the families of children diagnosed with Patau Syndrome. Also called Trisomy 13 Syndrome, having a third (extra) number 13 chromosome, occurs about 1 in 5,000 live births. Trisomy 13 children have multiple abnormalities. Some include heart defects, brain defects, cleft lip, cleft palate. The most severe are visual abnormalities, omphalocele, proboscis and holoprosencephaly.   
Pediatric Neurotransmitter Diseases Pediatric Neurotransmitter Disease Association   The PND association ia a disease organization representing children and families who are affected by a pediatric neurotransmitter disease.  “Pediatric Neurotransmitter Disease” is an umbrella term for genetic disorders that affect the synthesis, metabolism and catabolism of neurotransmitters in children. These inborn errors of metabolism affect the central nervous system in children and if left untreated can lead to severely compromised neurological function.  The symptoms of some pediatric neurotransmitter diseases can be completely treated whereas in other pediatric neurotransmitter diseases treatment can sometimes improve quality of life.  
Peripheral Arterial Disease Legs For Life      Legs For Life is a national screening program for Peripheral Arterial Disease (PAD), Abdominal Aortic Aneurysm (AAA), Carotid/Stroke, and Venous Disease.
Perthes Disease Perthes Association (UK)     The Association aims to help and advise families of children suffering from Perthes' disease and Associated conditions in all parts of the British Isles and overseas. Perthes disease (a potentially crippling disease of the hip) is a form of osteochondritis, which affects 5.5 per 100,000 children (mainly boys) between the ages of 2 and 15 years. 
Pemphigus Vulgaris National Pemphigus Foundation    The International Pemphigus & Pemphigoid Foundation was founded in 1994 as The National Pemphigus Vulgaris Foundation. Our founder, Janet Segall, with the support of several leading physicians in the field, created the first organization with the specific mission to serve and assist people living with all forms of pemphigus and pemphigoid, and the people who care for them.
Pentasomy X Syndrome Tetrasomy/Pentasomy X Support List   As parents of children who are diagnosed with tetrasomy x and pentasomy x syndromes, we understand how essential it is for them and their families seeking support and also for educators and professionals working with the families to have access to information.

Personality Disorders

 National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
Peter's Anomaly Peter's Anomaly Support Group Peter’s Anomaly: a rare congenital disorder in which the cornea may be scarred, and cataracts and glaucoma may be present.
Peutz-Jeghers Syndrome Peutz-Jeghers Syndrome Online Support Group Peutz-Jeghers Syndrome (PJS), a rare disorder that is either inherited from a parent or occurs spontaneously. Patients with PJS have hamaratomas predominately in the small intestine as well fewer amounts of the polyps in the large intestine and stomach. Purple/black pigment spots often dot the lips and other areas of the face and body. Most of the time, the spots disappear sometime in the teen years.
Pituitary Disorders Pituitary Disorders Education & Support     The PDES has brought thousands of patients, families, and medical professionals together for the purpose of gaining a better and broader understanding of pituitary tumors and related endocrine disorders.
Pfeiffer Syndrome National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Phobias National Phobics Society  (UK) The National Phobics Society works to relieve and support those living with anxiety disorders by providing information, support and understanding via an extensive range of services, including 1:1 therapy services. We work regularly with external agencies and healthcare professionals to improve the service provision offered in the main to those living with anxiety disorders. We also campaign to raise awareness of anxiety disorders through holding events like our annual 'Anxiety Disorders Awareness Week'.
Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
Pierre Robin Sequence Pierre Robin Network   Pierre Robin Sequence (PRS) is the name given to a combination of birth defects which usually include a small lower jaw, cleft palate and a tendency for the tongue to "ball up" in the back of the mouth. Many of these children have breathing and feeding problems early in their lives. Each child can be affected differently and will react different to different situations.
National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Pompe Disease Pompe Community    Pompe disease is a rare neuromuscular genetic disorder that affects approximately 5,000 to 10,000 people worl