More Links

Rarediseaseday.org is the official organization for all things related to Rare Disease Day! Here you can find information on the day, rare diseases, what has been done around the world/in the past, rare disease news, find out how you can get involved and much more!

Global Genes is an incredible organization that aims to provide hope to members of the rare disease community and ensure that medical equity is achieved and people are made aware of all the people affected by rare diseases. They strive to build communities and strengthen relationships, provide information, reach out to researchers and medical professionals and help people become their own advocates.

NORD is in many ways the leader of the rare disease world when it comes to research, leadership  and education programs, advocating for treatments and researching cures and ensuring the community is being advocated for. They have partnered with over 300 patient organizations to create a web of support for patients/families and have created a truly powerful group of people. 

The Canadian Organization for Rare Disorders is one of the many advocates for policies, treatments, research and accessibility in the rare disease community. They partner with governments, clinicians, researchers and many more to act as a voice for those affected by rare diseases in Canada. 

EURORDIS is yet another of the incredible organizations that acts as a voice for the RD community.  They strive to build relationships between patient organizations, support research and treatment development, increase awareness with the goal of reducing the impact of rare diseases on both patients and families.

The FDA is in charge of ensuring the health and safety of the public, including the rare disease community. Here you will find details about rare diseases, medical treatment advocacy, drug policies and how people can get involved.