RARE DISEASE WEEK 2020
The Cure CMD Advocacy Team was represented by 13 advocates at Rare Disease Week in Washington, D.C. during the last week of February. Advocates participated in events throughout the week sponsored by Rare Disease Legislative Advocates (RDLA), NORD, the FDA, and NIH.
The focal point of the week was a one-day Legislative Conference followed by a day of Hill visits to legislative offices. At the Conference,
advocates learned about current legislation efforts that help the Rare Disease community.
They also learned how to tell their story when speaking to Members of Congress and their staffers. The Cure CMD team collectively visited over 25 offices including Senators and Representatives from their respective states.
What was most memorable about the week in D.C?
"I always love hearing about other peoples journeys and I find it helps me tell my story on the hill in an even more meaningful way. "
"The moderator and speakers were informative and passionate about changing the narrative for Rare Diseases."
"Watching my daughter speak up for herself and the opportunity we all had to hear what others are going through and how they are advocating for themselves and loved ones."
"Meeting others from my state and the camaraderie with other CMD advocates and families."
"Spending time with other Rare Disease Advocates makes me feel less isolated. It helps to know that there are many others in this fight with me."
Feel free to reach out to
if you would like to attend next year's Rare Disease Week. The dates have already been announced: March 1-4, 2021.