You are invited to join us February 12-14, 2017 in Washington D.C. for what is going to be another critical year in Duchenne advocacy.
2016 marked a tremendous victory in our collective history, the first FDA approval of a Duchenne therapy – Exondys 51. It is important to remember that you, our advocacy community, paved the road to this approval. Beginning with the passage of the MD-CARE Act in 2001 followed by the reauthorization in 2008 and the Amendment in 2014, this community helped to carve a path for care improvements, research innovation, and drug development by enabling a public private partnership in Duchenne.
Every year, over 150 Duchenne advocates come to Washington in February to urge Congress to continue to make Duchenne a priority at the following agencies:
We MUST keep Duchenne on the front lines of agency priorities and maintain our growing presence in DC.
No matter what happens on Election Day, we will have a new President and Congress. It is imperative we come together as a united Duchenne community in February to establish new relationships with new leadership in order to expand the number of congressional champions who consider Duchenne among their top priorities. Your presence in D.C. this February is a critical part of the Duchenne community’s strength and impact going forward.
Don't be intimidated. Before you meet with your members of Congress, PPMD will provide you with extensive training and support, so you go into your meetings feeling empowered and prepared.
Let me know if you have any questions.