I am excited to be working with Rare & Ready Coalition in efforts to bridge the gap between insurance and necessary CARE for rare disease patients. Would you ever think fighting insurance for the appropriate care, medicine and therapies would be part of the every day struggle living with a rare disease?? Well it SHOULDN’T be.
In my efforts to make a change for the rare disease community I'm excited to share that I’ve joined with AllStripes and MLD Foundation on their mission to drive forward treatment research for MLD. As an MLD Ambassador, it's my goal to help the MLD research program reach 60 participants.