Cure CMD Advocacy Team Update

March 2020

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 Lani Knutson if you would like to attend next year's Rare Disease Week. The dates have already been announced: March 1-4, 2021.

RARE ON THE ROAD

The EveryLife Foundation and Global Genes are partnering for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates. They strive to build and activate the rare disease community at the local level. These one day events are free to attend!

Check out this year's dates and locations .

RARE ACROSS AMERICA

Couldn't make it to Rare Disease Week in D.C. this year? Then Rare Across America is for you!

Rare Disease Legislative Advocates (RDLA) schedules appointments for you with your Senators' and Representative's offices in your home state between August 3 and September 7, 2020. In addition, they provide resources on how to tell your story and what asks to present at the meetings.

Registration begins May 4.

Email your Members of Congress to support increased funding for the FDA’s Orphan Products Clinical Trial Grants Program and Natural History Grants Program . The deadline for them to submit this request to the Appropriations Committee is this Friday, March 13.

Attend RDLA's March 2020 Legislative In-Person Meeting and Webinar on March 19, 2020 at 3:00 pm EST to learn about current legislation affecting the Rare Disease community. Register here.

Learn about a new initiative encouraging the FDA to create a Rare Disease Center of Excellence which would elevate rare disease expertise within the agency and help to remove communication barriers across centers and divisions to accelerate and improve the rare disease therapy development process at the FDA. Then ask your members of Congress to sign onto a letter asking the FDA to do this.

Register to attend NORD's 2020 Living Rare, Living Stronger: NORD Patient and Family Forum in Cleveland, Ohio on May 14-16.

Know someone who would like to join the Cure CMD Advocacy Team? Email us and we'll add them to the list!