• Lani Knutson

Rare Disease Week - 2020 Report

Updated: May 3



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), National Organization for Rare Disorders (NORD), the EveryLife Foundation, the Food and Drug Administration (FDA), and National Institutes of Health (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 legislative efforts that help the Rare Disease community. For example, co-chairs of the Rare Disease Congressional Caucus are encouraging the FDA to create a Rare Disease Center of Excellence in an effort to improve treatments and health outcomes for those suffering from Rare Diseases. A Center of Excellence 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. Advocates learned how to talk about this proposal (and other asks) in their meetings with their Members of Congress.

At the Conference, advocates also learned how to tell their Rare Disease story as an affected individual, a caregiver, or family member when speaking to Members of Congress and their staffers. Often, Hill meetings are short (usually 15 minutes). Advocates need to be able to speak concisely and clearly while allowing other advocates from their state time to speak as well. During the Hill Day visits, the Cure CMD team collectively visited over 25 offices including Senators and Representatives from their respective states.

Cure CMD Advocates reflected on what was most memorable about the week in D.C.:?

● "I always love hearing about other people's 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."

Advocacy may seem intimidating and time consuming, but it can take as little as five minutes a month. You have a story to share, and the Cure CMD Advocacy Team wants to make sure our legislators hear that story. If you would like to learn how you can be involved in advocacy, please contact Lani Knutson (lani.knutson@curecmd.org).

Lastly, we want to hear your legislative concerns! Please contact Lani if you are experiencing a struggle that could be solved with legislation or you know of current legislation that would help your family.

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