Payor Advocacy

In the coming years, one of the most important things we can do is to help Payor systems* understand the importance of a treatment for FSHD.

*Payor systems = insurance companies, Medicare/Medicaid, and national health insurance systems

Living with a rare disease is already expensive. We want to make sure that once a treatment is approved, that it will be covered by insurance so that patients can actually afford it.

Read more below about the ways we are working on educating Payor systems about FSHD.

True Cost of FSHD Study