Rare Disorders

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Category Description:

Locate information and organizations that provide educational resources on the symptoms and treatments of various rare diseases.

  • About.com: Rare Diseases  - Presents an overview of rare diseases along with articles on getting a diagnosis, medical tests, and applicable drugs.
  • Cherubs  - Information from the Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support.
  • Office of Rare Disease  - Information on scientific activities and a portal providing information on major topics of interest in rare diseases research.
  • Orphanet  - Portal for rare diseases and orphan drugs. Features an alphabetic disease encyclopedia, plus details of clinical trials, orphan drugs and research links.
  • Program for Neurodevelopmental Function in Rare Disorders (NFRD)  - University of North Carolina at Chapel Hill program aimed at improving the quality of life of children affected by rare disorders and helping them achieve their full potentials.
  • Rare Disease Search Engine  - Specialized web search tool focused on information and resources involving rare diseases and related topics.
  • Rare Disease Therapeutics, Inc.  - Diopharmaceutical specializing in the development, registration, and distribution of orphan disease products.
  • Rare Diseases Clinical Research Network (RDCRN)  - Network composed of several distinctive consortia collaboratively working to improve the availability of rare disease information, treatment, clinical studies, and general awareness.
  • Rare Disorders  - Source for information on rare disorders or syndromes including uncommon forms of cancer, heart disease, and stroke. With news and health articles.
  • RareShare  - Offers disorder-based communities for patients, families, and health care professionals affected by rare disorders.
 
 
 
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