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- AIDS/HIV
- Allergies
- Arthritis
- Asthma
- Back
and Neck Injury
- Birth
Defects
- Brain
Injury
- Cancer
- Celiac
Disease
- Cerebral
Palsy
- Chronic
Fatigue Syndrome
- Chronic
Pain
- Cystic
Fibrosis
- Diabetes
- Downs
Syndrome
- Epilepsy
- Eye
Conditions
- Fibromyalgia
- Glaucoma
- Headaches
- Heart
Diseases
- Hemochromatosis
- Hemophilia
- Kidney
Disease
- Liver
Diseases
- Lyme
Disease
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- Mental
Health Disorders
- Multiple
Sclerosis
- Muscular
Dystrophy
- Myasthenia
Gravis
- Neurological
- Osteoporosis
- Polio
- Prader-Willi
Syndrome
- Progressive
Supranuclear Palsy
- Psoriasis
- Scleroderma
- Sickle
Cell Disease
- Sjogren's
Syndrome
- Sleep
Apnea
- Spina
Bifida
- Stroke
- Substance
Abuse
- Sudden
Infant Death Syndrome
- Thrombosis
- Thyroid
Disease
- Tourette
Syndrome
- Treacher
Collins Syndrome
- Tuberous
Sclerosis
- Turner's
Syndrome
- Williams
Syndrome
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- Children
Afflicted with Lymphatic Malformations
- CALM
- organization of parents and children
afflicted with lymphatic malformations.
Offers information, support, medical
references, and encourages research to
improve treatment.
- Cleft
Lip and Palate Association
(CLAPA)
- U.K. organisation offering
information and support to anyone with,
or affected by, cleft lip or cleft
palate.
- Cody
Unser First Step
Foundation
- not-for-profit corporation aimed at
raising research funds to fight
paralysis and build awareness of
Transverse Myelitis.
- Coeliac
Society
- U.K. society offers information and
advice on coeliac disease.
- Disfigurement
Guidance
- information on treatments,
literature, compensation and other
services and facilities concerning
disfigurement guidance and skin
camouflage.
- Dystonia
Medical Research
Foundation
- works to increase an understanding of
dystonia through research, awareness,
and support.
- Family
Caregiver
Alliance
- info, education and services for
families and professionals who care for
adults with cognitive disorders,
including Alzheimer's, stroke,
Parkinson's, brain injury, brain
tumors, Huntington's, and other brain
impairments.
- Florida
Infectious Disease
Society
- physicians in Florida dedicated to
the treatment and prevention of
infections, including HIV and
AIDS.
- Foundation
for Functional Gastrointestinal
Disorders
(IFFGD)
- provides information on IBS, GERD,
abdominal or pelvic pain, bowel
incontinence, and other GI
disorders.
- Friends'
Health
Connection
- connects people who are currently
experiencing or who have overcome the
same disease, illness, handicap or
injury in order to communicate for
mutual support.
- Global
Fund to Fight AIDS, Tuberculosis, and
Malaria
- works to mitigate the impact caused
by HIV/AIDS, tuberculosis, and malaria
in countries of need.
- Histiocytosis
Association of America Virtual
Offices
- online support for patients with
histiocytosis their family and
friends.
- Hormone
Foundation,
The
- promotes the prevention, diagnosis,
and treatment of hormone-related
conditions and diseases.
- Hughes
Syndrome
Foundation
- offers details of antiphospholipid
syndrome and its treatment, research,
and the foundation.
- Human
Growth
Foundation
- helps individuals with growth-related
disorders, their families, and
healthcare professionals through
education, research and
advocacy.
- International
Adhesions Society
- International
Pelvic Pain Society
- International
Society for the Study of
Cough
- promotes research in cough and
encourages the exchange of ideas and
information.
- Langer-Giedion
Syndrome
Association
- international support organization
for people and families living with
Langer-Giedion Syndrome and related
disorders.
- Lois
Joy Galler
Foundation
- acquires the funds needed to conduct
research and develop methods of
preventing or curing Hemolytic Uremic
Syndrome (HUS).
- Myoclonus
Research Foundation
- National
Aphasia
Association
- aphasia is an impairment of the
ability to use or comprehend words -
often a result of stroke or head
injury.
- National
Association for Down Syndrome
(NADS)
- news, resources, and scientific
information related to down syndrome
from NADS, a not-for-profit
organization serving people in the
Chicago metropolitan area.
- National
Association for
Incontinence
- National
Enuresis
Society
- features clips, news, and
information.
- National
Eosinophilia-Myalgia Syndrome
Network
- formed by EMS survivors to support
each other and their loved ones, and to
bring public awareness and
education.
- National
Gaucher Foundation
- National
Keratoconus
Foundation
- general information keratoconus, an
ailment of the eye.
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- National
Organization for Rare Disorders
(NORD)
- voluntary health organizations
dedicated to providing information on
the prevention, treatment, and cure of
rare "orphan diseases."
- National
Pancreas Foundation,
The
- committed to advancing education and
research related to diseases of the
pancreas, including pancreatitis and
pancreatic cancer.
- National
Parent-to-Parent Network
(MUMS)
- helping parents who have a child with
a rare diagnosis make connections with
other parents.
- National
Pediculosis
Association
- national clearing house on head lice
and scabies issues.
- National
Reye's Syndrome Foundation,
Inc.
- provides research and awareness for
this liver disease.
- Nevus
Network
- support group for individuals with
giant congenital nevi and their
families.
- Office
of Rare Diseases (ORD)
NIH
- offers information on over 6000 rare
diseases including current research,
publications from scientific and
medical journals, completed research,
ongoing studies, and patient support
groups.
- Ollier's
Disease Self-Help Group
- Opitz
Family
Network
- serves families of children with
genetic syndromes Opitz G/BBB (Opitz
Frias) Opitz C Opitz FG.
- Parent
to Parent of Georgia,
Inc.
- provides support and information to
parents who have a child with a
disability or special health care
need.
- Patient
Organization for Primary Immune
Deficiencies
(IPOPI)
- chat, conferencing, member
organizations around the world, great
resources on the various immune
deficiency diseases.
- PBC
Foundation,
The
- charity supporting sufferers of the
Liver Disease Primary Biliary
Cirrhosis.
- Pituitary
Society,
The
- seeks to further the understanding of
diseases of the pituitary
gland.
- Pituitary
Tumor Network
Association
- dedicated to support, pursue,
encourage, promote, and, where
possible, fund research on pituitary
tumors in a sustained and full-time
effort to find a cure for pituitary
diseases.
- Proximal
Femoral Focal Deficiency Virtual
Support Group -
PFFD
- for parents of children with the PFFD
birth defect.
- Purine
Metabolic Patients' Association
(PUMPA)
- charity supporting families with
members suffering from purine metabolic
diseases.
- Rehabilitation
Engineering and Assistive Technology
Society of North America
(RESNA)
- interdisciplinary association for the
advancement of rehabilitation and
assistive technologies.
- Society
for Light Treatment and Biological
Rhytms -
SLTBR
- dedicated to fostering research,
professional development, and clinical
applications in the fields of light
therapy and biological
rhythms.
- Sotos
Syndrome Support
Association
- provide a social support environment
for professionals and families of
individuals affected by Sotos Syndrome
so they can meet, exchange ideas and
help one another cope with the
condition
- Stevens
Johnson Syndrome
Foundation
- provide the public and medical
communities with information and
support.
- Stiff
Man Syndrome
Foundation
- nonprofit foundation organized
because of the terrifying experiences
of Chris Geilman who suffers from the
rare disorder.
- Tourette
Syndrome Association of New Jersey,
Inc.
- offering information and support
groups.
- Transverse
Myelitis
Association
- not-for-profit organization providing
support to families affected by
TM.
- Wobblers
Anonymouse
- support group for those damaged by
gentamicin. Symptoms include
oscillopsia and loss of
balance.
- Worldwide
Society of Wolfram Syndrome
Families
- support group for a rare
disease.
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