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May 16 @ 1:00 pm - 2:00 pm
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT
There is great progress toward new medicines for FSHD, but even when a drug does make it to market, patients may not be able to afford it because insurers and government payers often delay or deny access because they don’t perceive the value versus the cost. It’s hard to imagine a scenario where a drug that could help somebody with FSHD is out of their reach, but it’s a reality in many rare diseases every day. Project Mercury is a global initiative to tackle this issue. Patients must play an active role in advocating for drug access.
Our speakers are Josie Godfrey, an expert on these issues in other rare diseases and now a consultant to Project Mercury, and Amanda Hill, director of clinical research at the FSHD Society.
