Aidpage

If you have a rare disease it can be difficult enough, but trying to find the answers you need can be next to impossible! I have found a site that not only indexes rare diseases and disorders in alphabetical order, but they also link you to more information, resources, support,  and health care assistance (if available) 

 NORD - Rare disease database

NORD also administers Early Access Programs for investigational new drugs (INDs) under the Food and Drug Administration’s approved “Treatment-IND” programs that allow for a limited number of individuals to receive certain investigational drugs prior to FDA marketing approval, as well as a Travel Assistance Program that provides travel and lodging assistance for patients participating in clinical and research studies.