A Guide to Rare Disease Organizations

So for those of you out there living with a rare disease, I am sure that you are very well educated of all the government and non-government organizations that work toward creating awareness of, doing research on and provide educational materials about various rare diseases.

But for the Patient Worthy visitors who come to the site to simply educate themselves about rare diseases or out of sheer curiosity, they most likely don’t know about several of these organizations that play a crucial role in creating awareness.

The following list included government and non-government organizations that provide resources, education and clinical trial opportunities and information for those who are just starting off their rare disease research (PS: This list is by no means comprehensive, but includes some of the most prominent rare disease organizations in the U.S.):

  • CenterWatch – provides a list of patient organizations for different rare diseases. CenterWatch’s mission however, is to be the leading source of clinical trials information for both clinical research professionals and patients. To support this mission, they offer several professional, educational and informative services and resources from news and analysis on the industry to trial listings seeking study volunteers.
  • Eurodis – a European organization focused on bringing awareness to rare diseases in Europe. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 705 rare disease patient organisations in 63 countries.
  • NORD – National Organization for Rare Disorders, NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone. NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 230 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
  • HealthFinder – healthfinder.gov has resources on a wide range of health topics selected from approximately 1,400 government and non-profit organizations to bring you the best, most reliable health information on the Internet.

Would you like to add to this list? comment below and let us know what other organizations you look to for information! Like our Twitter and Facebook for more information on rare diseases.

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