Rare Disease Resources

Living with a Rare Disease brings a whole different set of obstacles. Most rare diseases have no treatments and very few specialists who know anything about the disease. Here are some resources that have helped me and I hope they will help you as well.

 

National Organization for Rare Diseases (NORD)

  • The National Organization for Rare Diseases (NORD) is an amazing resource for rare disease patients. They offer educational content for a wide range of rare diseases and they also offer some financial support to help patients get to specialists, pay for meds and so much more. They are an excellent resource for patients.

Global Genes

  • Global Genes is another great resource for rare disease patients that offers support through educational material on a wide range of rare diseases and they have events you can get involved in as well to meet other rare disease patients.