Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. Sponsored by Rare Disease Legislative Advocates (RDLA), RDW will be held virtually from February 22 - March 3 and is free to all participants. Learn more and register to attend! Rare Disease Day is February 28! Join the rare disease community all around the world to bring an awareness of rare diseases. In the US, get involved by attending an event sponsored by NORD or enter NORD's social media contest #ShowYourStripes. Outside the US, check out rarediseaseday.org to see how you can get involved.

Share Your CMD Story Sharing your story can be a powerful tool to bring awareness to the CMD Community. Not sure where and how to do this? Check out these opportunities. RARE Compassion Project sponsored by Global Genes Share Your Air Travel Story Help influence rare disease policy by sharing your story with the EveryLife Foundation. NORD is collecting stories as part of their Rare Disease Day celebration this year.

UN Adopts Resolution on Challenges of Living with Rare Diseases On December 16, the UN General Assembly formally adopted the UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families. This is the first ever UN text to give full visibility to the over 300 million Persons Living with a Rare Disease (PLWRD) worldwide and calls for action to address the specific challenges faced by PLWRD and their families. The Resolution is co-sponsored by an unprecedented 54 countries and was adopted by consensus by all 193 UN Member States. The document focuses on the importance of non-discrimination and the key pillars of the UN Sustainable Development Goals, including health, access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society. This is a major shift in international policy which places the needs of PLWRD firmly on the agenda of the UN and its agencies (UNICEF, UN WOMEN, UNDP).

Upcoming Events

Rare Disease Week on Capitol Hill 2022 will take place virtually February 22nd - March 3rd, 2022. 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.

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

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