Support Groups H, I, J, K, L

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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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Support Groups "H"

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"H"


Quick Links:     Heart Ailments     Hepatitis     Huntington's Disease

Haemochromatosis Heamchromatosis Society   (UK)     Haemochromatosis is a genetic disorder causing the body to absorb an excessive amount of iron from the diet: the iron is then deposited in various organs, mainly the liver, but also the pancreas, heart, endocrine glands, and joints. Normally the liver stores a small amount of iron for the essential purpose of providing new red blood cells with iron, vital for health. When excessive quantities of iron are stored in the liver it becomes enlarged and damaged. Deposits of iron may also occur in other organs and joints, causing serious tissue damage. 
Hallerman-Streiff 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.
Hartnup Disease 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.
Hirschsprung's Disease 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.  
Heart Failure Heart Failure Online   Heart failure may result from one or the sum of many causes. It is a progressive disorder that must be managed in regard to not only the state of the heart, but the condition of the circulation, lungs, neuroendocrine system and other organs as well. Furthermore, when other conditions are present (e.g. kidney impairment, hypertension, vascular disease, or diabetes) it can be more of a problem. Finally, the impact it can have on a patient psychologically and socially are important as well.       
Heart Failure Society of America    Heart failure is a condition that affects nearly five million Americans of all ages and is responsible for more hospitalizations than all forms of cancer combined. Over 400,000 new cases of heart failure will be diagnosed in the next year. Yet many people with heart failure are not aware they have it, because some of the most common symptoms of heart failure, such as feeling tired and short of breath, are often mistaken for normal signs of getting older.
Hershey Hearts   We are committed to supporting, helping, and educating families with children with congenital heart disease. This is achieved through meetings, newsletters, and a visitation program. Our aim is to strengthen families during their long journey from despair to hope.
Heart Disease
and related illnesses          		American Heart Association      Our mission is to reduce disability and death from cardiovascular diseases and stroke.     
Heartbeat International With each new year, comes new challenges. Are you up for the fight? We are! Join our crusade in the ongoing fight against treatable heart disease and Jumpstart-a-Heart today! Everyday around the globe millions of people are dying needlessly from treatable heart diseases because they are too poor to afford a pacemaker and implant surgery. Learn how our life-saving pacemaker program is making a difference around the world and how you can help.
Kids With Heart    Our organization was formed in 1985 with the main mission of providing support, information, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis. 
Mended Hearts    Mended Hearts has been offering the gift of hope to heart disease patients, their families and caregivers for more than 50 years. Recognized for its role in facilitating a positive patient-care experience, Mended Hearts partners with 460 hospitals and rehabilitation clinics and offers services to heart patients through visiting programs, support group meetings and educational forums. Our mission is to "inspire hope in heart disease patients and their families."
National Heart Forum, The  (UK) The National Heart Forum (NHF) is a leading alliance of over 50 national organizations working to reduce the risk of coronary heart disease and related conditions such as stroke, diabetes and cancer. Our diverse alliance comprises charities, non-governmental and medical professional organizations.
World Heart Federation    World Heart Federation helps people achieve a longer and better life through prevention and control of heart disease and stroke, with a focus on low and middle income countries.                             
American Health Assistance Foundation  AHAF is one of America's leading supporters of scientific and medical investigations into Alzheimer's Disease, Glaucoma, Macular Degeneration, Heart Disease, and Stroke.
Larry King Cardiac Foundation      The mission of the Larry King Cardiac Foundation is to provide funding for life saving cardiac procedures for individuals who, due to limited means and no insurance, would be otherwise unable to receive life saving treatment.         
WomenHeart Our mission is to improve the quality of life and healthcare for women living with heart disease, and to advocate for their benefit.  
Helicobacter Pylori Helicobacter Foundation  (Australia)      Helicobacter pylori is a spiral shaped bacterium that lives in the stomach and duodenum. It has a unique way of adapting in the harsh environment of the stomach. The inside of the stomach is bathed in about half a gallon of gastric juice every day. Gastric juice is composed of digestive enzymes and concentrated hydrochloric acid, which can readily tear apart the toughest food or microorganism. Bacteria, viruses, and yesterdays steak dinner are all consumed in this deadly bath of chemicals. It used to be thought that the stomach contained no bacteria and was actually sterile, but Helicobacter pylori changed that.
Hemochromatosis American Hemochromatosis Society   Hemochromatosis, also known as iron overload disease or "genetic iron poisoning", is the most common genetic disease in the U.S.A.. One in 8 are "silent carriers" of the gene mutation and 1 in 100-200 have the double mutation putting them at high risk for developing full blown HH. HH can affect men, women and children at any age. Most of the 33 million Americans who have the HH gene mutation don’t know it but it can be diagnosed easily and quickly.            
Iron Overload Diseases Association, Inc. Undetected or untreated excess iron kills after inflicting injury to a variety of body organs.
Iron Disorders Institute   An iron disorder occurs when iron is out of balance in the human body.
Hemolytic Uremic Syndrome Foundation for Children with Atypical HUS  Hemolytic Uremic Syndrome is a rare but important cause of severe kidney failure in children. 2-4 new cases per 100,000 are reported-Possibly 7,500 children have HUS. Patients may require dialysis. While permanent kidney failure is rare, HUS is one of the leading causes of kidney failure.
Hemophilia Hemophilia Galaxy    Hemophilia is a rare genetic blood clotting disorder that primarily affects males. People living with hemophilia do not have enough of, or are missing, one of the blood clotting proteins naturally found in blood. Two of the most common forms of hemophilia are A and B. In persons with hemophilia A (also called classical hemophilia), clotting Factor VIII is not present in sufficient amounts or is absent. In persons with hemophilia B (also called Christmas disease), clotting Factor IX is not present in sufficient amounts or is absent. People with hemophilia do not bleed more profusely or bleed faster than normal; they bleed for a longer period of time.
National Hemophilia Foundation    The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research. 
World Federation of Hemophilia    (Canada)   The World Federation of Hemophilia improves and sustains care for people with inherited bleeding disorders around the world.
Hemophilia Federation of America The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.
Hepatitis Hepatitis B Foundation        We are dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. Our commitment includes funding focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as the primary source of information for patients and their families, the medical and scientific community, and the general public.          
Hepatitis Foundation International  The National Nurses Advisory Council for Liver Wellness & Viral Hepatitis was created to improve hepatitis related health outcomes by initiating collaborative programs: To promote education and prevention; To improve the quality of care given to patients; To serve as advocates for patients, researchers, and medical professionals
Children’s Liver Disease Foundation Our vision is that childhood liver disease will be understood and fought effectively thereby ensuring that young people with liver disease and families will be able to take control of their lives and achieve their full potential.

Hermansky-Pudlak Syndrome

Hermansky-Pudlak Syndrome Network, Inc.   Hermansky-Pudlak Syndrome is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding.
Hidradenitis Suppurativa Hidradenitis Suppurativa Foundation  Hidradenitis Suppurativa (HS) is an inflammatory skin disease that affects an estimated 1% of the population. Also called Acne Inversa, the main features of HS include painful nodular and boil-like lesions, scarring, sinus tracts and recurrent discharge, which have a significant impact on a patient's quality of life. HS generally appears in the second or third decade of life. It is not contagious, and is not a sexually transmitted disease. The areas most commonly affected are under the arms, the groin and buttocks, and under the breasts. The disease is variable and recurrent. Patients may present with solitary or multiple lesions in one area, with lesions in many areas, or in more severe cases may have large, recurrent, draining lesions that never completely heal.         
Histiocytosia Histiocytosis Association of America  Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multiorgan involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.
Hodgkin's Lymphoma CureHodgkins.com  CureHodgkins.com is an on online magazine that connects Hodgkin's Disease patients and their families with the most up to date and relevant information on the Internet, serving over 1,500 new readers each month from more than 53 nations around the globe. CureHodgkins.com is packed with resources and information, as well as stories of hope and survival. New to CureHodgkins.com are articles that highlight recent news about Hodgkin's survivors as well as others around the globe working to find the cure. 
Hughes Syndrome Hughes Syndrome Foundation  (UK) Antiphospholipid Syndrome was first described as a complication of the disease ‘lupus,’ but it is not. Hughes Syndrome is an autoimmune disorder which can present many clinical features, some of which can be life threatening, including strokes and thrombosis, and it can also be the cause of recurrent miscarriage. The good news is that, once diagnosed, Hughes Syndrome is potentially treatable; the bad news is that, as the condition is relatively new, it often goes undetected or misdiagnosed.
APS Foundation of America    Antiphospholipid antibody syndrome (APS) causes blood clots in the veins or arteries, miscarriages and other problems. The condition can affect any organ, including the lungs, brain, liver, kidneys, eyes, heart and skin. Women with the syndrome can have repeated miscarriages or late-term death of the fetus
Huntington's Disease Huntington's Disease Society of America Huntington's Disease is a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically.      
Hereditary Disease Foundation     The Hereditary Disease Foundation focuses on Huntington's disease, a fatal, autosomal-dominant neurological illness causing involuntary movements, severe emotional disturbance and cognitive decline.
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.   

Hydrocephalus

 

 

 

 

Hydrocephalus Association    Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities called ventricles inside the brain. CSF contains nutrients and proteins necessary for the nourishment and normal function of the brain. It also carries waste products away from surrounding tissues. Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase.  Hydrocephalus that is congenital (present at birth) is thought to be caused by a complex interaction of environmental and perhaps genetic factors. Aqueductal stenosis and spina bifida are two examples. Acquired hydrocephalus may result from intraventricular hemorrhage, meningitis, head trauma, tumors and cysts. Hydrocephalus is believed to occur in about 2 out of 1,000 births. The incidences of adult-onset hydrocephalus and acquired hydrocephalus are not known.
Hydrocephalus Family Support Group      Our purpose is to nurture understanding, and awareness of Hydrocephalus in our community. We offer hope and encouragement by providing a chat, message board and contacts for families to learn, voice concerns and share experiences with Hydrocephalus. 
Hydrocephalus Foundation, Inc.    The Hydrocephalus Foundation, Inc. is a nonprofit organization dedicated to providing support, educational resources and networking opportunities to patients and families affected by hydrocephalus. The Foundation also promotes related research and facilitates the training of healthcare professionals to improve patient outcome.  
National Hydrocephalus Foundation    In addition to providing the public with informational brochures, NHF offers a variety of help guides, maintains a reference library, videos/CD's on hydrocephalus, has support groups, will assist others in starting an NHF support group in their area, and publishes a quarterly newsletter, Life~Line.
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.
Hyperlexia Hyperlexia Parents Network, The Hyperlexia has characteristics similar to autism, behavior disorder, language disorder, emotional disorder, Attention Deficit Disorder, hearing impairment, giftedness or, paradoxically, mental retardation. To develop effective teaching strategies and more typical childhood development, it is important to differentiate Hyperlexia from other disorders. Thorough psychological evaluation by a psychologist who is familiar with the syndrome of Hyperlexia is a crucial first step. Hearing, neurological, psychiatric, blood chemistry, speech and language and genetic evaluations can be performed to rule out other disorders but are not needed to identify Hyperlexia
Hypertension American Society of Hypertension The mission of the Society is to organize and conduct educational activities designed to promote and encourage the development, advancement, and exchange of scientific information in all aspects of research, diagnosis, and treatment of hypertension,
and related cardiovascular diseases.
Hypertrophic Cardiomyopathy Hypertrophic Cardiomyopathy Association  The main feature of hypertrophic cardiomyopathy is an excessive thickening of the heart muscle. Heart muscle may also thicken in normal individuals as a result of high blood pressure or prolonged athletic training. Furthermore, there is a fine line between and athletic heart and a heart with HCM.
Hypoglycemia Hypoglycemia Support Foundation, The   Hypoglycemia is the body's inability to properly handle the large amounts of sugar that the average American consumes today. It's an overload of sugar, alcohol, caffeine, tobacco and stress.   In medical terms, hypoglycemia is defined in relation to its cause. Functional hypoglycemia, the kind we are addressing here, is the oversecretion of insulin by the pancreas in response to a rapid rise in blood sugar or "glucose".  In hypoglycemia, the pancreas sends out too much insulin and the blood sugar plummets below the level necessary to maintain well-being.  Since all the cells of the body, especially the brain cells, use glucose for fuel, a blood glucose level that is too low starves the cells of needed fuel, causing both physical and emotional symptoms.
Hypopituitarism 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.
Hypospadias Hypospadias.org       Hypospadias and epispadias are birth anomalies that result from defective development of the penis during embryological development.  Normally the urethra (the tube that serves as a conduit through the penis for passage of urine and semen) runs the entire length of the penis, forming an opening at the tip.  However, the penis sometimes does not form correctly and the urethra fails to reach the tip of the penis.  The incompletely developed urethra may form an opening at the under side of the penis (hypospadias) or the upper side of the penis (epispadias). 
Hypothyroidism &
Hyperthyroidism 		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.
Thyroid Foundation of America   Your thyroid gland tells every cell in your body the rate at which it should function. Having too little hormone, called hypothyroidism, puts you into a dragging slowdown. This is a problem for more than 10 million Americans-of whom 8 million don't know it. Having too much hormone, called hyperthyroidism, races your engine, so you feel all revved up-as if you were burning out. This problem affects some 4.5 million Americans, but at least 600,000 of them have yet to be diagnosed.
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Support Groups "I"

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Quick Link:     Independent Living

Idiopathic Thrombocytopenic Purpura Platelet Disorder Support Association      ITP, idiopathic thrombocytopenic purpura, also known as immune thrombocytopenic purpura, is classified as an autoimmune disease. In an autoimmune disease the body mounts an attack toward one or more otherwise normal organ systems.  In ITP, platelets are the target.  They are marked as foreign by the immune system and eliminated in the spleen, or sometimes the liver.
Immune Deficiency Immune Deficiency Foundation      The Immune Deficiency Foundation is the national non-profit health organization dedicated to improving the diagnosis and treatment of primary immune deficiency diseases through research and education.
Imperforate Anus 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.  
Incontinence National Association for Continence    NAFC is the world's largest and most prolific consumer advocacy organization dedicated to public education and awareness about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.
Incontinentia Pigmenti Incontinentia Pigmenti International Foundation            Incontinentia Pigmenti (Bloch-Sulzberger Syndrome) is a genetic disease of the skin, hair, teeth and central nervous system. The condition was named because of the way the skin looks under the microscope. The most prominent features of IP involve the skin and skin derivatives (hair, teeth, and nails). In most patients, it is a cosmetic problem only. However, some medical reports describe problems with the skeleton, brain, and other systems in the body.                  
Independent Living Disability Resources, Inc. is a national nonprofit organization that provides information about resources for independent living.  We serve thousands of individuals with disabilities through a multidisciplinary network of service providers and consumers. In order to reach as many people with disabilities as cost effectively as possible, we target our services and publications to libraries, disability organizations, independent living centers, rehabilitation facilities, educational institutions, and health and social service providers.
The Institute on Independent Living serves self-help organizations of disabled people who work for self-determination and equal opportunities; provides information, training materials and technical assistance on accessibility, personal assistance, advocacy, legislation and peer support; publishes articles, reports, manuals or comments and other materials related to Independent Living.
Independent Living USA     No mission statement.   News and information network for disabled.
Access Center for Independent Living    The mission of the Access Center for Independent Living (ACIL) is to ensure that people with disabilities have full and complete access to the community in which they reside.
ADAPT    There's no place like home; and we mean real homes, not nursing homes. We are fighting so people with disabilities can live in the community with real supports instead of being locked away in nursing homes and other institutions.
Independence Through Enhancement of Medicare and Medicaid The mission of the ITEM Coalition is to raise awareness and build support for policies that will improve access to assistive devices, technologies and services for people of all ages with disabilities and chronic conditions.       
Insomnia American Insomnia Association   A patient-based organization that is dedicated to assisting and providing resources to individuals who suffer from insomnia. The AIA advocates and promotes awareness, education, and research of insomnia disorders and encourages the formation of local support groups.         
International Joseph Disease International Joseph Disease Foundation    Symptoms of Machado Joseph Disease most commonly begin between the ages of 15 and 40, but may appear earlier or much later in life. Progression may be fast or slow, and life expectancy ranges from 10-30 years after the disease begins. Symptoms include weakness in the arms and legs, staggering, lurching gait,easily mistaken for drunkenness, difficulty with speech and swallowing, involuntary eye movements, and frequent urination        
Interstitial Cystitis Interstitial Cystitis Network    Interstitial Cystitis Network, a publishing company dedicated to interstitial cystitis and other pelvic pain disorders. We strive to present the best research, information, and support directly into the homes and offices of our users (patients, providers & IC researchers).
Intra-Uterine Growth Retardation 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.
Irritable Bowel Syndrome Irritable Bowel Syndrome (IBS) Self Help Group                        The Irritable Bowel Syndrome Self Help Group, established in 1987, is a patient advocate group in support of those who suffer from IBS, those who are looking for support for someone who has IBS, and medical professionals who want to learn more about IBS. The IBS Self Help and Support Group is the largest on-line community for people with Irritable Bowel Syndrome.
Irritable Bowel Syndrome Association    An organization dedicated to helping everyone who suffers from IBS through patient support groups, treatment, accurate information and education.
Iron Disorders Iron Disorders Institute       An iron disorder occurs when iron is out of balance in the human body.
NBIA Disorders Association    Created to provide families, physicians, and support providers with information about an inherited disease called Neurodegeneration with Brain Iron Accumulation, also called Hallervorden-Spatz Syndrome.
IsoDicentric 15 IsoDicentric 15 Exchange Advocacy & Support      People born without an extra chromosome but who have a segment of duplicated material within chromosome 15 are said to have an interstitial duplication chromosome 15.  there can be differences in the way their hearts, kidneys, or other body organs are formed.    
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Support Groups "J"

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Jaw Disorders (TMJ) Jaw Joints & Allied Musculo-Skeletal Disorders Foundation    JJAMD is a non-profit charitable national educational, research, and advocacy organization. It works in promoting awareness, prevention, research, and knowledge of the Jaw Joints to whole body health. The disorder to the TemporoMandibular Joints is mostly known as “TMJ Disorders”. TMJ is one of the most pervasive, least understood and controversial health disorders in existence today. TMJ is now acknowledged as a component in other disorders, and is also called by a variety of other names and acronyms, adding to the controversy.
Jeune Syndrome Jeune Syndrome Information and Support Network    Jeune's Syndrome is an autosomal recessive genetic disorder of the thoracic bone structure. Major features include  a small thoracic cage, shortened bones of the arms and legs, and renal dysfunction.
Joseph Disease International Joseph Disease Foundation    Symptoms of Machado Joseph Disease most commonly begin between the ages of 15 and 40, but may appear earlier or much later in life. Progression may be fast or slow, and life expectancy ranges from 10-30 years after the disease begins. Symptoms include weakness in the arms and legs, staggering, lurching gait,easily mistaken for drunkenness, difficulty with speech and swallowing, involuntary eye movements, and frequent urination        
Joubert Syndrome Joubert Syndrome Foundation    Joubert Syndrome is a rare, genetic disorder that affects the area of the brain that controls balance and coordination. The disorder is characterized by absence or underdevelopment of the part of the brain called the cerebellar vermis and a malformed brain stem. The most common features of the disorder include lack of muscle control, an abnormal breathing pattern called hypernea, sleep apnea, abnormal eye and tongue movements, and hypotonia. Other malformations such as extra fingers and toes, cleft lip or palate, tongue abnormalities, and seizures may also occur.   
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Support Groups "K"

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"K"

Quick Links:      Kidney Disease

Kabuki Syndrome Kabuki Syndrome Network      The name "Kabuki make-up" was selected because of the facial resemblance to the makeup of actors in Kabuki, traditional Japanese theatre. The arched eyebrows, thick eyelashes, eversion of the lateral lower lid, and long palpebral fissures (the measurement from inner to outer corner of eye) all contributed to this resemblance, especially in children of Asian descent.
Kawasaki Disease Kawasaki Disease Foundation    Kawasaki Disease Foundation strives to be at the forefront of Kawasaki Disease issues by uniting the personal insight of families with the expertise of medical professionals.      Kawasaki Disease is an illness that involves the skin, mouth, and lymph nodes, and typically affects children who are under the age of 5. The cause is unknown, but if the symptoms are recognized early, kids with the disease can fully recover within a few days. If it goes untreated, it can lead to serious complications that can involve the heart. 
Keratosis Pilaris KeratosisPilaris.org Keratosis Pilaris is a very common genetic follicular disease manifested by the appearance of rough bumps on the skin. Primarily, it appears on the back and outer sides of the upper arms, but can also occur on thighs and buttocks or any body part except palms or soles. There are several different types of keratosis pilaris, including keratosis pilaris rubra (red, inflamed bumps), alba (rough, bumpy skin with no irritation), rubra faceii (reddish rash on the cheeks) and related disorders.            
Keratoconus National Keratoconus Foundation Keratoconus, or KC for short, is a thinning disorder of the cornea that causes distortion and reduced vision.  The National Keratoconus Foundation (NKCF) is an outreach program of the non-profit organization Discovery Eye Foundation   The NKCF provides information and support to persons diagnosed with keratoconus.  It publishes a newsletter, distributes patient information booklets, provides physician referrals, helps start local support groups and maintains this website for patient information and discussion. 
Kidney Disease National Kidney Foundation    The National Kidney Foundation, Inc., a major voluntary health organization, seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.
Kidney Dialysis Foundation     The Kidney Dialysis Foundation was established in 1996 with the commitment to provide high quality, subsidised dialysis for needy members of our community. KDF is a not-for-profit charitable organization and is not affiliated to any other kidney organization in Singapore. KDF's mission is to ensure that no kidney patients will perish because of the lack of funds for dialysis. To date, KDF has served over 380 patients, of which 34 have undergone successful transplantation.       
American Association of Kidney Patients (AAKP)     The American Association of Kidney Patients (AAKP) is a national non-profit organization founded by kidney patients for kidney patients.  We strive to educate and improve the health and well-being of chronic kidney disease (CKD) patients, those on hemodialysis, peritoneal dialysis and transplant recipients.
American Kidney Fund         Nearly one-fifth of American dialysis patients received financial help from the American Kidney Fund in 2006. AKF was founded in 1971, to help a single individual with kidney failure pay for dialysis. Thirty-six years later, AKF has become the leading source of direct financial aid to chronic kidney disease patients across the nation. In 2006, AKF served more than 63,500 patients, distributing $81.9 million in grants.   
DaVita Patient Citizens    DPC is dedicated to improving the quality of life for people with chronic kidney disease and those on dialysis. Through education and involvement we can all make a difference.
National Kidney Cancer Association    The Kidney Cancer Association is made up of patients, family members, physicians, researchers, and other health professionals.  We fund, promote, and collaborate with the National Cancer Institute (NCI), American Society for Clinical Oncology, American Urologic Association, and other institutions on research projects.  We educate families and physicians, and serve as an advocate on behalf of patients at the state and federal levels.
NephCure Foundation         The NephCure Foundation is the only organization solely committed to seeking a cause and cure for two potentially devastating kidney conditions, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). NephCure is made up of patients, their families and friends, researchers, physicians and other healthcare professionals joining forces to create awareness and generate funding for research.          
Hereditary Leiomyomatosis Renal Cell Cancer Family Alliance HLRCC is one of several familial syndromes involving kidney cancer.
PKD Foundation    Polycystic Kidney Disease is the most common genetic, life threatening disease affecting more than 600,000 Americans and an estimated 12.5 million people worldwide - regardless of sex, age, race or ethnic origin. Polycystic means multiple cysts. In effect, PKD denotes multiple cysts on each kidney. These cysts grow and multiply over time, also causing the mass of the kidney to increase. Ultimately, the diseased kidney shuts down causing end-stage renal disease for which dialysis and transplantation are the only forms of treatment.
Kleine-Levin Syndrome Kleine-Levin Syndrome Foundation    Kleine-Levin Syndrome is a rare complex neurological disorder characterized by periods of excessive amounts of sleep and altered behavior. The disorder strikes adolescents primarily.
Klinefelter Syndrome Klinefelter Syndrome Support     Klinefelter syndrome is a genetic disorder that occurs in males who have three or more sex chromosomes. At least two of the chromosomes must be X chromosomes, and one must be a Y chromosome. The condition causes males to have some female-like physical features.               
American Association for Klinefelter Syndrome Information and Support (AAKSIS) A national volunteer association with the mission of education, support, research, and understanding of 47 XXY and its variants, collectively known as Klinefelter syndrome.
KS&A  KS&A’s mission is to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.  We endeavor to fulfill this mission of satisfying unmet needs and improving the lives of individuals and families affected by X and Y chromosome aneuploidies including 47XXY, Klinefelter syndrome, Trisomy X, XYY syndrome and associated conditions.
Klippel-Feil Syndrome Klippel-Feil Syndrome Network   Klippel-Feil Syndrome describes congenital fusion of at least two of the seven vertebrae in the cervical-spine. In addition there may be fusion or anomalies of vertebrae in the thoracic or lumbar-spine.  Many people actually have the syndrome but are never diagnosed because their symptoms may be so minor. The defect occurs around the 5th to 8th week of gestation. The exact cause is unknown at this time, but there does appear to be a mix of both inherited and sporadic cases.
Klippel-Trenaunay Syndrome Klippel-Trenaunay Support Group     The K-T syndrome is a rare congenital malformation that may include the following: port-wine stain or birthmark, soft tissue and bony hypertrophy, venous malformations, and lymphatic abnormalities. Complications may include bleeding, cellulitis, venous thrombosis, or pulmonary embolism. Associated abnormalities in other systems, such as gigantism of toes, hand and feet anomalies, lymphedema, or involvement of the abdominal and pelvic organs may also occur. 
Krabbe Disease Krabbe's Kids           Krabbe disease involves the white matter of the central and peripheral nervous systems. Early symptoms include feeding difficulties, gastroesophageal reflux, irritability, and clasped thumbs. Later symptoms include hypertonicity followed by hypotonicity, flaccidity, deafness and blindness. In the infantile form, there is rapid mental deterioration, which usually leads to death before the age of two.
Hunter's Hope    Established in 1997 by Pro Football Hall of Fame member and former Buffalo Bills Quarterback, Jim Kelly, and his wife, Jill, after their infant son, Hunter, was diagnosed with Krabbe Leukodystrophy, an inherited, fatal, nervous system disease. The Foundation is the Kelly's life long commitment to increase public awareness of leukodystrophies as well as to increase the likelihood of early detection and treatment. Their ultimate goal is to raise money to fund research efforts to identify new treatments, therapies, and a cure for Krabbe and other leukodystrophies.
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Support Groups "L"

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"L"


Quick Links:     Leukemia     Liver Diseases     Lupus & Lyme Disease

Lactose Intolerance 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.
Langer-Giedion Syndrome

Langer-Giedion Syndrome Association – currently inactive
Latex Allergies American Latex Allergy Association   The American Latex Allergy Association is a national organization that creates awareness of latex allergy through education, and provides support to individuals who have been diagnosed with latex allergy. This website is designed to provide educational materials, publications and product information to assist you with your understanding of natural rubber latex allergy.
Learning Disabilities National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
National Center for Learning Disabilities The National Center for Learning Disabilities  works to ensure that the nation's 15 million children, adolescents and adults with learning disabilities have every opportunity to succeed in school, work and life. 
Legg-Calve-Perthes Disease   - see Perthes Disease
Legionnaires' Disease Legionella.org     Our mission is to improve awareness and recognition of Legionnaires' disease as a community or hospital-acquired pneumonia, provide current information about Legionella infections to healthcare professionals, suggest a proactive approach for prevention of Legionnaires' disease by routine environmental cultures.
Leprosy (Hansen's disease) Leprosy Mission International    TLM is a worldwide partnership, active in over 50 countries, with a vision for a world without leprosy and a passion to eradicate the causes and consequences of leprosy. As long as leprosy afflicts individuals and communities, we are committed to doing all we can to break its power and impact. This means more than just a cure for the disease; it means addressing the underlying causes, working to prevent disability and restoring dignity and wholeness.
American Leprosy Missions  Founded in 1906, American Leprosy Missions (ALM) provides care to people around the world with leprosy and with Buruli ulcer and related disabilities.  ALM is a non-denominational Christian ministry of hope and restoration for those suffering with these diseases. The ministry supports scores of projects in approximately 15 countries. Donor gifts provide training and transportation for leprosy workers, case-finding and diagnosis, physical and vocational rehabilitation, community development and much more
Lesch-Nyhan Syndrome 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.
Leukemia Leukemia and Lymphoma Society, The     The Leukemia & Lymphoma Society is the world's largest voluntary health organization dedicated to funding blood cancer research, education, and patient services. The Society's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.  
Childhood Leukemia Center   Created to serve the childhood cancer community by providing information, emotional support, and advocacy.
Lauri Strauss Leukemia Foundation      Our mission is to find a cure for leukemia and allied cancers by means of awarding LSLF  Discovery Grants providing “seed money” to young investigators in the fields of leukemia and allied cancers.  Additionally the Foundation provides for patient care, promotes marrow donor education and conducts marrow drives within blood drives.
JMML Foundation, The       Juvenile Myelomonocytic Leukemia (JMML) is a rare form of leukemia which affects young children, generally under the age of 5. JMML affects around 4 in every million children and the average age at diagnosis is around 2 years old.        
Lewy Body Dementia Lewy Body Dementia Association, Inc.                  Lewy body dementia is a progressive brain disease and the second leading cause of degenerative dementia in the elderly, accounting for up to 20% of all dementia cases, or 800,000 patients in the US. Over 50% of Parkinson’s disease patients develop “Parkinson’s disease dementia” (PDD), which accounts for at least 750,000 patients. (PDD is also a Lewy body dementia.)         
Limb Diseases/Amputations Limbkids      Limbkids Support Association Inc is a non-profit, voluntary organization comprised of parents, professionals and interested people concerned with the care of children who have congenital or acquired limb differences.
Limbless Association (UK)   The Limbless Association provides information, advice and support for people of all ages who are without one or more limbs. It has a nationwide network of volunteer visitors who are all amputees themselves, offering support and encouragement to prospective amputees, carers and those already trying to come to terms with limb loss or deficiency.
Liver Diseases American Liver Foundation The American Liver Foundation (ALF) is the nation's leading nonprofit organization promoting liver health and disease prevention. ALF provides research, education and advocacy for those affected by liver-related diseases, including hepatitis.
Children's Liver Association for Support Services        C.L.A.S.S. is an all-volunteer, nonprofit organization dedicated to serving the emotional, educational, and financial needs of families coping with childhood liver disease and transplantation. Our goal is to be both a service to families and a valuable resource for the medical community.           
Liver Kids  (Australia) A little about the creator of this site. After having my son diagnosed with biliary atresia I naturally developed an interest in liver disease. When my son progressed to the next stage and required a liver transplant the natural progression was to want to know more about liver transplants and ultimately how to raise awareness in organ donation.
Children’s Liver Disease Foundation Our vision is that childhood liver disease will be understood and fought effectively thereby ensuring that young people with liver disease and families will be able to take control of their lives and achieve their full potential.
Leukodystrophy United Leukodystrophy Foundation   The leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells. These disorders are progressive, meaning that they tend to get worse throughout the life of the patient.
Lowe Syndrome Lowe Syndrome Association    Boys with Lowe Syndrome are born with cataracts in both eyes, which are usually removed at a few months of age. Most boys are fitted with glasses, contacts, or a combination of the two. Glaucoma is present in about 50% of the boys with Lowe syndrome, though usually not at birth. Prescription eye drop and/or surgery is required to maintain appropriate eye pressure in these cases.
Lung Diseases American Lung Association As part of our American Lung Association® community, you have the benefits of in-depth and timely information on lung issues including asthma, tobacco control, and environmental health
Lupus Lupus Alliance of America   Lupus can be a frightening, uncertain disease. Feeling scared and a bit lost is normal when you first hear the diagnosis…but there is more to having this disease than these feelings. The Lupus Alliance of America offers understanding and support, provides information and assists patients to get past “having lupus” and back to living. The Alliance, our affiliates and all of our activities are committed to people with lupus and helping them to address the effects of lupus.       
Lupus Foundation of America   With nearly 300 chapters, branches and support groups in 32 states, the Lupus Foundation of America is the nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. Our mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure. Research, education, and patient services are at the heart of LFA's programs.  
Alliance for Lupus Research (ALR)   To find better treatments and ultimately prevent and cure systemic lupus erythematosus (SLE, or lupus), a debilitating autoimmune disease.
Lyme Disease Lyme Disease Foundation, Inc.  The Lyme Disease Foundation (LDF) is the premier nonprofit dedicated to finding solutions for tick-borne disorders. Realizing the ability to find solutions involves a multi-discipline effort, the LDF includes the four cornerstones of progress (businesses, patients, government, and the medical community) to work together to find solutions to tick-borne disorders.  (Also has information about Rockey Mountain Spotted Fever.)
Lyme Disease Network        Welcome to The Lyme Disease Network, dedicated to public education of the prevention and treatment of Lyme disease and other tick-borne illnesses.
American Lyme Disease Foundation, Inc. The American Lyme Disease Foundation, Inc. is dedicated to the prevention, diagnosis and treatment of Lyme disease and other tick-borne infections. The Foundation plays a key role in providing reliable and scientifically accurate information to the public, medical community and government agencies about tick-borne diseases and their effects on human health and quality of life.
Lymphangioleio-
myomatosis 		LAM Foundation       Lymphangioleiomyomatosis, better known as LAM, is a progressive lung disease that affects women of all races, usually during their childbearing years. Symptoms include a collapsed lung, fluid in the lungs, shortness of breath, fatigue, cough, and chest pain. LAM often goes misdiagnosed as asthma, emphysema, and pulmonary bronchitis. Scientists estimate that there could be as many as 250,000-300,000 LAM patients worldwide who are going misdiagnosed or undiagnosed.                      
Lymphatic Malformation Children Afflicted With Lymphatic Malformations - CALM          For over 100 years, doctors referred to these disorders as tumors. They often identified the disorders with the term "lymphangioma" and "cystic hygroma." Now, doctors believe that these conditions are not really tumors, but rather they are deformed tissues that result from abnormal embryonic development of the lymphatic vascular system. Thus, the term,"lymphatic malformation" (LM), is more appropriate.
Lymphedema National Lymphedema Network (NLN)      Lymphedema is an accumulation of lymphatic fluid in the interstitial tissue that causes swelling, most often in the arm(s) and/or leg(s), and occasionally in other parts of the body. Lymphedema can develop when lymphatic vessels are missing or impaired (primary), or when lymph vessels are damaged or lymph nodes removed (secondary). When the impairment becomes so great that the lymphatic fluid exceeds the lymphatic transport capacity, an abnormal amount of protein-rich fluid collects in the tissues of the affected area. Left untreated, this stagnant, protein-rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen availability in the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in lymphangitis (infection). 
Lymphomic Diseases

 

 

Lymphoma Coalition The Lymphoma Coalition, a non-profit network organization of lymphoma patient groups, is a global initiative dedicated to raising awareness of lymphoma, a common form of cancer. 
Lymphoma-net.org   Welcome to Lymphoma-net.org, a website devoted to supporting patients (and their families) with non-Hodgkin's lymphoma (NHL), a type of cancer of the blood that affects the white blood cells, which are usually involved in protecting against infection. This site contains a great deal of information to help your understanding of NHL and its treatments.
Lymphoma Research Foundation  If you or a loved one has been diagnosed with lymphoma, the most common blood cancer and third most common cancer of childhood, the Lymphoma Research Foundation (LRF) is here to help. On this Web site you will find valuable information about the different types of lymphoma, diagnostic techniques your health care practitioners may use, and treatment options.
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