MDA has supported a total cost-of-illness study for three common neuromuscular disorders that may affect drug development and social and economic policies
"We now have numbers to point to," said Annie Kennedy, MDA's senior vice president of advocacy. "It's not just a back-of-the-envelope calculation anymore.
MDA advocacy in Washington
I have had the great privilege of witnessing some of the most transformative legislative moments in our MDA community’s history. While we have many heroes and legends among us, there are also many heroes whose names most will never know — people who, through their outreach to their elected officials, brought great champions to the cause of neuromuscular disease research and services.
Did you ever attend an MDA community event and see someone sporting a piece of durable medical equipment that you were sure your insurance would never cover? Or hear someone describe his or her experience with an insurance appeals process and think “how did they even know where to begin?” Or read articles in Quest magazine about other members in our MDA community who are traveling the globe and...
Know your candidates' views on crucial issues, and use your power as an advocate and a voter
Did you know that people with disabilities are 10 percent less likely to be registered to vote, and 20 percent less likely to actually go to the polls and vote in an election?
MDA is supporting the inclusion of ‘accelerated approval pathway’ language in the Prescription Drug User Fee Act; community members should contact their legislators
Update (July 10, 2012) — Reauthorization of the Prescription Drug User Fee Act (PDUFA) was signed by President Obama on July 9, 2012, complete with a provision that creates an accelerated approval pathway for drugs for rare diseases.