In the U.S., a disease is considered “rare” if it impacts fewer than 200,000 people. This broad definition encompasses almost 7,000 diseases —including those under MDA’s umbrella—and includes millions of Americans. In fact, 1 out of every 10 people in the U.S. are currently living with a disease that is classified as “rare.”
When considered together, it’s clear that rare diseases are not rare at all.
Rare Disease Day was established in 2008 in an effort to raise global awareness about rare diseases and takes place each year on the last day of February. Since 2016 is a leap year, the day will be celebrated on February 29.
At MDA we believe that together, we are stronger—and Rare Disease Day helps demonstrate our strength in numbers.
MDA is committed to funding research, providing clinical care and raising awareness about muscular dystrophy, ALS, spinal muscular atrophy and other muscle-debilitating diseases that take away the ability to walk, to talk, to breathe and to hug.
Leveraging our community’s collective voice is critical to help advance programs and public policies that help save and improve the lives of people living with neuromuscular and other rare diseases. By supporting initiatives such as increased federal funding for biomedical research and the Advancing Targeted Therapies for Rare Diseases Act (S. 2030) our community joins together to advocate for public policies that impact people living with many different diseases—including those MDA serves.
There are many opportunities to get involved this February 29—from encouraging your members of Congress to support legislation that would benefit the rare disease community, to simply sharing your story, to attending a formal gathering in celebration of the day. Rare Disease Day events are held around the world, and the NIH dedicates the entire day to the event with a focus on:
- Sharing NIH’s commitment to rare disease research that would help patients and improve development of diagnostics and treatments;
- Facilitating dialogue and collaboration among public and private researches, patients, advocates, and policymakers and regulatory agencies.
- Gaining insight into the latest rare disease information to advance research and therapeutic efforts.