Rare Disease Week is here!

Members of the Cure CMD Advocacy Team are participating in Rare Disease Week on Capitol Hill 2022 events over the next two weeks. Though we can't be in person again this year, we are excited to learn about policy issues affecting the Rare Disease community and to meet with Members of Congress to discuss these issues.

This year, legislative asks include:

If you aren't signed up to attend Rare Disease Week, no problem! You can still email your Members of Congress about these important pieces of legislation or simply tell your CMD story. Find out who represents you here. Don't forget to use the Cure CMD Fact Sheet when communicating with your elected officials.
News of Note | Upcoming Events
The Economic Burden of Rare Diseases: Quantifying The Sizeable Collective Burden And Offering Solutions

Telehealth and the Rare Disease Community: A video tutorial presented by the Rare Disease Legislative Advocates

Health & Human Services (HHS) Issues New Guidance for Health Care Providers on Civil Rights Protections for People with Disabilities

Disabled Hikers Forge a New Path: Accessibility in the National Parks
The MDA Advocacy Institute is holding a webinar on February 24 at 7pm EST called Unlocking Treatment Development for Rare Neuromuscular Diseases.

Rare Disease Day is February 28, 2022.

National Institutes of Health (NIH) is holding their annual Rare Disease Day conference on February 28, 2022. Register to attend this virtual event.

On March 4, 2022, FDA will hold a public meeting for Rare Disease Day, “Sharing Experiences in Rare Disease Together”. You can click here to learn more and register.
Know someone who would like to join the Cure CMD Advocacy Team? Email us and we'll add them to the list!