Today we celebrate the 10th Anniversary of Rare Disease Day. Every year on the last day of February, people around the world celebrate Rare Disease Day—with the aim of raising global awareness about rare diseases and their impact on the lives of those living with rare disorders. While individually we may do this every day, the last day of February marks an opportunity for us come together as a united group, to make our voices louder.
MDA families represent more than 40 different rare diseases—as all of the disorders under MDA’s umbrella are classified as “rare”. While definitions may differ from country to country, in the U.S., a disease is considered “rare” if it impacts fewer than 200,000 people, which encompasses almost 7,000 diseases. In fact, 1 out of every 10 people in the U.S. are currently living with a disease that is classified as “rare.” When added together, rare diseases are anything but rare.
In celebration this year MDA will again participate in activities in and around Washington, D.C.—from the National Institutes of Health (NIH) to Capitol Hill.
Increasing awareness for the diseases under MDA’s umbrella is critical to ensuring that policy makers understand the needs of the neuromuscular disease community and the important role they play in helping accelerate the development of treatments and cures and ensuring access to critical programs and supports. This Rare Disease Day we encourage you to raise your voice and reach out to your members of Congress to help ensure that the collective voices of those living with neuromuscular disease are heard.
With health care reform and access to programs and services critical to the neuromuscular and rare community on the Congressional agenda this year, there has never been a more important time to get involved. The past year ushered in important policies that increased funding for research and provided opportunities for the voice of the patient to be heard in more ways in the drug development process than ever before—but we must keep the momentum going and we need your help.
Initiatives including increased funding for biomedical research has been a top priority for MDA along with providing clinical care and raising awareness to finding treatments and cures for muscular dystrophy, ALS, spinal muscular atrophy (SMA) and other neuromuscular diseases. Within the last year, funding of research has been increased, and breakthrough therapies have been approved for diseases under MDA’s umbrella—so now is the time to redouble our efforts to ensure progress continues.
Learn more about MDA’s public policy and advocacy programs and register for MDA’s Public Policy & Advocacy conference.
