Genetic Disorders
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- Gene mutation means paracyclist has no fat under skin
- The BBC reports on budding Paralympic cyclist Tom Staniford, who has an extremely rare condition that means he is unable to store fat under his skin. (June 16, 2013)
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- A Novel Syndrome of Mandibular Hypoplasia, Deafness, and Progeroid Features Associated with Lipodystrophy, Undescended Testes, and Male Hypogonadism
- Shastry et al give the first formal characterisation of MDP syndrome. (July 14, 2010)
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- MCAD Angel
- Dedicated to raising awareness of the genetic disorder known as MCAD deficiency and the importance of early detection.
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- Mowat-Wilson
- Discussion site for mowat-wilson syndrome. Includes a links page, photos, a community page and a discussion area.
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- Robert Kenneth Picklesimer
- Born with Jeune Syndrome or Asphyxiating Thoracic Dystrophy in Louisville Kentucky. He underwent corrective surgery in San Antonio Texas, called the Titanium Rib Project.
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- Camp Funshine
- Free summer camp for children with cystic fibrosis. Provides information on the camp, fundraising, chat room and picture gallery.
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- Sunny Shores Sea Camp
- Free five-day summer camp for children, teens, adults and their families in Vero Beach, Florida. Includes camp information, FAQs, galleries and directions.
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- The Cystic Fibrosis Center
- Offers three medically supervised camps in Dead Sea, Israel. Information includes schedule, medical research, newsletter, FAQ, and registration form.
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- The Cystic Fibrosis Center at Stanford
- Information on services provided, ongoing clinical trials, news from and about individuals with CF and basic information.
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- Azer's Cystic Fibrosis Website
- About a boy who has CF. A parent's personal weblog about the experiences of dealing with this chronic illness, and in depth information about CF.
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- Tildonk Fights Cystic Fibrosis
- Site by a family from Belgium with a son with CF. Information on support from their community and fund-raising efforts. In English.
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- HealingWell Cystic Fibrosis Forum
- Active message board and chat for caregivers and individuals with Cystic Fibrosis. Share support, give advice, or offer coping skills. Moderated by volunteers.
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- A Wish for Wendy
- Softball tournament benefiting Cystic Fibrosis research in honor of Wendy Carol Lipman who died 15 days after birth from cystic fibrosis.
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- Team Trevor
- Trevor, now 5, was diagnosed with Cystic Fibrosis when he was 5 months and his medical conditions are costly. Find out how to donate or volunteer to find a cure.
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- Boomer Esiason Foundation
- A resource for those affected by this disease. Includes details about the organization, fund raising, events and a newsletter.