Rare Disease Day

Today is the fifth International Rare Disease Day which will be recognized and celebrated in over 40 countries worldwide.

Started on February 29, 2008 by EUROIDS (The European Organisation for Rare Diseases) this day is used for gaining individual hope and political awareness for those who suffer with rare diseases around the globe.

Events scheduled for this year focus on ÔÇ£solidarityÔÇØ with the slogan ÔÇ£rare but strong together.ÔÇØ To learn more click here.

Below is a list of Rare Disease Communities that exist (found on http://www.rarediseasecommunities.org/en), but others can be found through an available search engine.

  • Alkaptonuria (AKU)
  • Alternating Hemiplegia
  • Atypical Hemolytic Uremic Syn.
  • Beh?ºetÔÇÖs Syndrome
  • CAPS
  • CDG
  • Cystinosis
  • Dravet syndrome
  • Ehlers-Danlos syndrome (EDS)
  • Epidermolysis Bullosa
  • Familial Mediterranean Fever
  • Glut1 DS
  • Hereditary Spastic Paraplegia
  • Waldenstrom macroglobulinemia
  • Multiple Myeloma
  • Moebius syndrome
  • Paraneoplastic Neurological Syn.
  • Von Hippel-Lindau