Challenges of Living with Rare Diseases

Rare disease patients are treated by physicians who are taught in school of medicine about diseases that they're likely to encounter in their practices. In other words, not rare or relatively unprecedented conditions. As a result, many rare diseases just aren’t taught in school of medicine. Understandable, since there are quite 7,000 rare diseases. In contrast, one in every 5,000 people are born with Ehlers-Danlos Syndrome, a gaggle of inherited disorders marked by extremely loose joints, very stretchy skin that bruises easily, and easily damaged blood vessels. Patients regularly lose important years prior to being appropriately analysed and treated.

Related Associations of Rare Diseases Research:

Alzheimer's disease Organizations, Ann & Robert H. Lurie Children’s Hospital, Birmingham children’s Hospital, Boston Children’s Hospital, Canadian Organization for Rare Diseases, Chicago Rare Disease Foundation, Children’s hospital of Pittsburgh, National Alliances for Rare Diseases, National Institute of Health (NIH), National Organization for Rare Diseases, NDC Medicine, Rare Diseases Patient Association Funding, Rare Diseases South Africa, Rare Diseases Translational Research Collaboration.


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