Mar. 24, 2014
Posted at March 24, 2014 2:13 pm by Mary Dunkle

3 Responses to Making Sure The Rare Disease Patient Voice is Heard on Capitol Hill

  1. Ann Hallett says:

    I have stiffperson syndrome and would like to see more research in this area. I also have an unknown disorder that causes severe vomiting and I need to go to the hospital frequently for IV meds. I wish she I got in a crisis I could be treated at home but I can my afford the medications. Do you know that I picked a box of 12 suppositions it cost me 117
    00. I can’t afford that

  2. I wrote many comments on the Rare Disease Blog page.
    I am happy to report that others with my rare disease Parry Romberg
    Syndrome that I helped advocate through my own story has helped others like me also obtain
    SSD insurance.
    Other patients must come forward and advocate
    in behalf of their rare disease and have the courage to
    tell and share their own stories on many websites because
    so many people don’t even know or heard of most rare diseases.
    Find the courage and tell your stories!

  3. Margee' Morris says:

    I wish someone would make Capitol Hill recognize all of the Nam Vets that are dying of Glioblastoma Multiforme Stage 4 Brain Cancer. It cannot be a coincidence that all of these Nam Vets are dying 40+ years later of the same disease.

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