Rare Disease Online Resource

"About Us:

Rare Disease, Orphan Disease, Rare Disorder or Rare illness
There are many ways to name them, and there are just as many different individual diseases – over 5,000 and growing. In Europe, a disease is declared rare or an orphan disease if it affects 1 in every 2,000 persons or less, and in the USA, 1 in every 1,500.

Problem 1
Individually, rare diseases or orphan diseases have a small voice because of the nature of the diseases – they are rare.

Problem 2
Complicating the problem even more, is the fact that very few physicians know how to properly diagnose and treat any given rare disease because they are so uncommon.

Problem 3
Not only do rare diseases not obtain a lot of attention and have few physicians who understand them – only a small number of rare diseases have treatment options."