CHAMPIONS ACTION NETWORK unites all who are affected by a rare disease on a physical, mental, or emotional level. Being a part of the Champions Action Network for rare disease makes you a part of an army of people who are ready to tackle reforming policy to create better opportunities for those affected by rare disease.

Being a CHAMPION means that you are a part of a community of people (mother,father, sister, cousin, aunt, friend of someone with a rare disease) who are committed to helping those with rare diseases everywhere.


We’ve learned that with every person diagnosed with a rare disease there is a community to back them 100%.
We’ve learned that with every rare disease there is not enough research being done to find the cure.
We’ve learned that no matter the rare disease the barriers to treatment, to accessible compliance, and to a better quality of life are universal.
We are here to unite the communities of all rare diseases to fight together for the betterment of each other.

We are here to fight for a better and longer future.