Support Groups N, O, P, Q
How to Use -- Contents
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.
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.
Links to Support Group pages:
Alphabetical List: |
Quick Links to selected categories: |
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Q |
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Support Group Home Page Includes directions, hints for use, etc. |
See the "Medical Information" page for Medical Definitions, Pharmaceuticals and Home Remedies, Advocacy Groups, Medical Articles | ||
| Have We Missed a Support Group or Ailment? We are constantly looking for more information and more links. Please help us improve our site and service. The Internet had millions of web pages dedicated to medical conditions and support groups; we can only sample a few of them. If you know any sites we should include write to suggestions@slightlycreaky.com | |||
Caution - Proceed with care. Slightly Creaky is not responsible for the content of web sites listed here nor the actions taken by the people owning, managing, or participating on them.
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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Updates: We review and update this page every 4 months. Many support groups change names or even terminate their services. Should you discover a bad link or wish to suggest that we add one, please contact suggestions@slightlycreaky.com
We try to avoid commercial sites, but in many cases they are the only ones who provide information and support. If you are looking to buy or sell medical products, please use a generalized search engine.Support Groups "N"
"N"
| 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 Support Group A community of patients, family members and friends dedicated to dealing with Nail Patella Syndrome, together. |
| 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. |
Support Groups "O"
"O"
| 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. | |
| 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 | Ollier's Disease Support. Message board. |
| 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. |
| Orphan Diseases: See Rare Diseases. | |
| 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". | |
Support Groups "Pa" through "Pi"
"Pa" through "Pi"
| 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. | |
| 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 | Anxiety 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. | |
"Po" through "Pz"
| Pompe Disease | Pompe Community Pompe disease is a rare neuromuscular genetic disorder that affects approximately 5,000 to 10,000 people world wide. It occurs in babies, children, and adults who inherit a defective gene from each parent. The disease manifestations can vary greatly from one person to the next. Progressive muscle weakness is the most common symptom of both the infantile-onset and the late-onset forms of Pompe disease. |
| Acid Maltase Deficiency Association The Acid Maltase Deficiency Association,was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe's Disease. |
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| Porphyia | American Porphyria Foundation The APF is dedicated to improving the health and well-being of individuals and families affected by porphyria. Porphyria is a group of at least eight disorders that differ considerably from each other. A common feature in all porphyrias is the accumulation in the body of "porphyrins" or "porphyrin precursors." Although these are normal body chemicals, they normally do not accumulate. Precisely which of these chemicals builds up depends upon the type of porphyria. The clinical manifestations of the different types of porphyria are not the same. Forms of treatment also depend on the type of porphyria. Therefore, it is difficult to make general statements that apply to all these disorders. The symptoms arise mostly from effects on the nervous system or the skin. Effects on the nervous system occur in the acute porphyrias. Proper diagnosis is often delayed because the symptoms are nonspecific. Skin manifestations can include burning, blistering, and scarring of sun-exposed areas. |
| Postpartum Depression | 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. | |
| Post-Polio Syndrome | Post-Polio Health International (PHI) Post-Polio Health International's mission is to enhance the lives and independence of polio survivors and home ventilator users through education, advocacy, research and networking. |
| Post Traumatic Stress Disorder | Post Traumatic Stress Disorder Gateway PTSD is a medical diagnosis, established in 1980, defining symptoms that last at least a month after experiencing a major trauma. These symptoms include remembering or reliving the trauma when you do not choose to; feeling numb and withdrawn; and, having forms of anxiety that interfere with daily life. |
| National Center for PTSD The National Center for PTSD (NCPTSD) aims to advance the clinical care and social welfare of U.S. Veterans through research, education and training on PTSD and stress-related disorders. This site is an educational resource on PTSD and traumatic stress, for veterans and also for mental health care providers, researchers and the general public. | |
| Gift From Within Gift from Within is a non-profit organization dedicated to those who suffer post-traumatic stress disorder (PTSD), those at risk for PTSD, and those who care for traumatized individuals. | |
| Sidran Foundation Because many people underestimate the developmental, emotional, psychological, and spiritual injuries that can result when people experience or witness traumatic events, Sidran Traumatic Stress Institute helps people understand, recover from, and treat traumatic stress (including PTSD), dissociative disorders, and co-occurring issues, such as addictions, self injury, and suicidality. | |
| Deployment Health Clinical Center Deployment Health Clinical Center arose from the studies and treatment for Gulf War illnesses. DHCC is chartered by the DoD Health Affairs as the clinical arm of the overall effort to serve soldiers during post-deployment. This site provides content relevant to health-related issues that soldiers encounter when returning from deployment. | |
| Postural Tachycardia Syndrome | POTS Place Often more simply referred to as postural tachycardia syndrome, or POTS, this disorder is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. The defining symptom of POTS is an excessive heart rate increment upon standing. However, as you will discover, there are a multitude of other symptoms that often accompany this syndrome. As such, POTS can be a difficult disorder to detect and understand. |
| Prader-Willi Syndrome | Prader-Willi Syndrome Association Dedicated to serving individuals affected by Prader-Willi syndrome, their families, and interested professionals. PWS is a A disorder of chromosome 15 Its major characteristics include hypotonia, hypogonadism, hyperphagia, cognitive impairment, difficult behaviors. The major medical concern is morbid obesity. |
| Precocious Puberty | 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. |
| Premenstrual Syndrome | National Association for Premenstrual Syndrome NAPS is the only independent specialist patient and clinical PMS medical charity. Led by our members we support sufferers and improve understanding of PMS. |
| Primary Biliary Cirrhosis | Primary Biliary Cirrhosis Support Group Unite people with Primary Biliary Cirrhosis, help them cope with their disease and improve the quality of their lives through support and education using an online medium. Primary Biliary Cirrhosis (PBC) is a chronic liver disease that slowly destroys the bile ducts within the liver (intrahepatic bile ducts). Liver inflammation over a period of years may cause scarring which leads to cirrhosis. PBC is NOT alcohol or drug related, and it is NOT contagious. |
| Primary Carnitine Deficiency | 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. |
| Primary Ciliary Dyskinesia | PCD Foundation Primary ciliary dyskinesia is a progressive disorder affecting organ systems that rely on ciliary activity for proper function. These organ systems include the upper and lower respiratory tract, the middle ear and the reproductive organs. Other ciliated areas, such as the ventricles of the brain, may be affected but this appears to be very rare. Congenital heart defects, intestinal malrotation and splenic abnormalities and other defects have been reported in PCD. |
| Primary Immunodeficiency | INFO4PI (Jeffrey Modell Foundation) When a defect in the immune system is inherited (carried through the genes), it is called primary, or inherited, immune deficiency. There are over 100 forms of Primary Immunodeficiency, ranging widely in severity. Together, they affect more people than leukemia and lymphoma combined. Primary Immunodeficiency often presents itself in the form of "ordinary" infections. Physicians sometimes treat the infections while missing the underlying cause, allowing the illnesses to recur, and leaving the patient vulnerable to vital organ damage, physical disability, and even death. |
| Primary Sclerosing Cholangitis | PSC - Support Primary sclerosing cholangitis, a chronic cholestatic liver disease characterized by periductal inflammation of bile ducts. Progressive loss of bile ducts impairs bile flow, ultimately resulting in liver cirrhosis. The disease is often accompanied by inflammatory bowel disease; mostly ulcerative colitis and sometimes Crohn's disease. The exact causes of PSC are unknown, but it is thought that the disease might be triggered by as yet unidentified environmental factor(s) in genetically susceptible individuals. |
| Progeria | 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. |
| Progeria Research Foundation Hutchinson-Gilford Progeria Syndrome is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. Its name is derived from the Greek and means "prematurely old." | |
| Progressive Familial Intrahepatic Cholestasis | PFIC A Resource for Parents PFIC (Progressive Familial Intrahepatic Cholestasis) describes the clinical findings in a form of liver disease that affects children. Taken word for word, it means: Progressive: tending to get worse over time; Familial: passed down to a child from the parents by way of the genes; Intrahepatic: involves disease inside the liver and not the bile ducts outside the liver; Cholestasis: means poor bile flow and build-up of substances in the liver that should be put into bile. It is also called Byler's Disease |
| Progressive Ossoeous Heteroplasia | Progressive Ossoeous Heteroplasia Association Progressive Osseous Heteroplasia is a rare genetic condition in which the body makes extra bone in locations where bone should not form. Extra bone develops inside skin, subcutaneous tissue (fat tissue beneath the skin), muscles, tendons, and ligaments. This ”out of place extra bone formation” is commonly referred to as heterotopic ossification. In people with POH, nodules and lace-like webs of extra bone extend from the skin into the subcutaneous fat and deep connective tissues, and may cross joints. Extra bone formation near the joints leads to stiffness, locking, and permanent immobility. |
| Progressive Supranuclear Palsy | Progressive Supranuclear Palsy Association (PSP-Europe)PSP, or Progressive Supranuclear Palsy, is a degenerative disease involving the death of selected neurons (nerve cells) in the brain. Over a period of time, usually some years, this can affect progressively balance, mobility, vision, speech and the ability to swallow. There can also be other symptoms, as PSP is a very individual disease. |
| 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. | |
| Prolactinoma | Pituitary Disorders Education & Support A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. |
| Propionic Acidemia | Propionic Acidemia Foundation Dedicated to finding improved treatments and a cure for PA by funding research and providing information and support to families and medical professionals. Symptoms will present themselves within days of birth or later in childhood depending on the severity of the disorder. Symptoms may include: refusal to eat, poor sucking ability, vomiting, dehydration, lethargy, acidosis, and excess ammonia in the blood. If not treated, mental impairment, coma and death can follow. |
| Propionic Acidemia Research Network The mission of Propionic Acidemia Research Network is to facilitate communication between the academic research community, physicians and educators, and to provide grants to researchers looking for better treatments and a cure for PA. | |
| Prostate Cancer | Orchid Cancer Appeal (UK) The Orchid Cancer Appeal was the first registered charity dedicated to fund research into diagnosis, prevention and treatment of testicular, prostate and penile cancer and to increase public awareness of these previously neglected diseases. |
| Prostatitis | Prostatitis Foundation (Europe) Prostatitis is inflammation of the prostate gland. Inflammation causes swelling of the gland and can cause local pain. Prostatitis does not increase the chances for a man to develop prostate cancer. |
| Prosthetics | College Park Industries College Park is committed to the research and development of the finest prosthetic products in the world. Tens of thousands of people around the world prove that College Park has set the standard for prosthetic foot and ankle performance. |
| Össur We create prosthetics and orthotics that enable people to live the kind of life they want, a life without limitations. Aware of the challenges you face, we respond, improving on what exists today and redefining technology for a better tomorrow. | |
| Otto Bock Health Care For more than 90 years we have provided innovative, dependable ways to make it easier to be active for people who face mobility challenges. Our products range from the Harmony Volume Management system to the C-Leg microprocessor-controlled knee and from the Kimba children's stroller to advanced myoelectric prostheses. | |
| Fourroux Orthotics and Prosthetics Our mission is to provide the highest quality and latest state of the art technology available in orthotics and prosthetics. We recognize that each person is unique and has individual aspirations. Each devise is made with the patient and their family in mind. | |
| Ohio Willow Wood Company Ohio Willow Wood, a leader in designing and manufacturing prosthetic products, is dedicated to helping amputees worldwide. Founded in 1907, we’ve made it our business to provide the best prosthetic solutions possible for amputees. With our products such as Alpha® Liners, the Pathfinder® II foot, and P-POD™ pediatric products amputees can be freed in body and in spirit. | |
| Next Step Orthotics & Prosthetics, Inc. As one of the country's most highly regarded prosthetic firms, Next Step is at the forefront in beta-testing and utilizing state-of-the-art components, giving our clients access to the latest advances in the field. | |
| Proteus Syndrome | Proteus Syndrome Foundation Proteus Syndrome is a condition which involves atypical growth of the bones, skin, head and a variety of other symptoms. At this time there are over 120 documented cases worldwide. However, not all cases of proteus syndrome are documented, therefore it is unknown how many individuals have this syndrome. The syndrome became widely known when it was determined that Joseph Merrick (depicted in the play "The Elephant Man") had severe Proteus syndrome rather than neurofibromatosis as was initially suggested. |
| Prune Belly Syndrome | Prune Belly Syndrome Network The incidence of prune belly syndrome is 1 in 40,000 live births; 95% of cases occur in males. Prune belly syndrome is a multisystem disease complex which derives from a primary defect in mesodermal development. The major prognostic factor is the degree of dilation of the urinary tract; 20% of patients are stillborn, 30% die of renal failure or urosepsis within the first two years of life, and the remaining 50% have varying degrees of urinary pathology |
| Psoriasis | National Psoriasis Foundation A patient-driven organization that is the voice for the millions of Americans affected by psoriasis and psoriatic arthritis |
| Pseudoxanthoma Elasticum | National Association for Pseudoxanthoma Elasticum Nape is an organization committed to the support for people who have Pseudoxanthoma Elasticum, an inherited disorder that affects the skin, the retina of the eyes and the cardiovascular system. |
| PXE International Pseudoxanthoma elasticum is an inherited disorder that affects selected connective tissue in some parts of the body. Elastic tissue in the body becomes mineralized, that is, calcium and other minerals are deposited in the tissue. This can result in changes in the skin, eyes, cardiovascular system and gastrointestinal system. | |
| Pulmonary Arterial Hypertension | PHCenral Pulmonary arterial hypertension is an often misdiagnosed lung disorder occurring as a primary idiopathic disease or as a complication of a large number of respiratory and cardiac diseases. PAH can occur with or without an identifiable cause. When a person has PAH, the blood pressure in the pulmonary artery rises far above normal levels. The pulmonary artery is the blood vessel carrying oxygen-poor blood from the right ventricle, one of the pumping chambers of the heart, to the lungs. In the lungs, the blood picks up oxygen and then flows to the left side of the heart, where it is pumped by the left ventricle to the rest of the body through the aorta. |
| Pulmonary Fibrosis | Pulmonary Fibrosis Foundation The Pulmonary Fibrosis Foundation is the primary organization dedicated to finding a cure for and raising awareness of Pulmonary Fibrosis, an often fatal lung disease. |
| Pulmonary Hypertension | Pulmonary Hypertension Association Pulmonary hypertension is a rare blood vessel disorder of the lung in which the pressure in the pulmonary artery (the blood vessel that leads from the heart to the lungs) rises above normal levels and may become life threatening. |
| Purine Diseases | Purine Research Society When we consider the many different roles purines play in our metabolism, it is not surprising that the diseases of purine metabolism are as varied, ranging from asymptomatic conditions, which are only discovered accidentally, to disorders with severe neurological abnormalities, which are ultimately fatal. As with other metabolic diseases, each disorder is caused by a defective gene which results in an enzyme with too little or too much catalytic activity. |
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