CONGRATULATIONS!

CMD community member Avery Roberts was recently named a 2021 RareVoice Award finalist in the category of Teen Advocate by the EveryLife Foundation. Awardees will be announced at the RareVoice Awards taking place virtually on December 15th, 2021 at 7:00 p.m. ET. The celebration will be live-streamed on www.RareVoiceAwards.org Yay Avery! We are proud of you! Rachel Alvarez, Cure CMD's Executive Director, was named a 2021 RARE Champions of Hope Nominee by Global Genes in the Advocacy by an Individual Category. The 2021 Champions of Hope event will be held in-person in Philadelphia, PA on November 18th at 6:30pm EST. The event will also be live-streamed here. Thanks for being an advocate for the CMD community, Rachel!

Watch the recording of the Cure CMD Advocacy Webinar: Using Your Voice For Change

UPCOMING EVENTS The National Organization for Rare Disorders (NORD) will hold a virtual meeting on Project RDAC, an initiative designed to both optimize the efforts of states that have passed Rare Disease Advisory Council (RDAC) legislation and to enable all states to someday create high-functioning RDACs. Register here for this November 16, 2021 meeting starting at 2:30pm EST. Rare Disease Week on Capitol Hill 2022 will take place virtually February 22nd - March 3rd, 2022.

SIGN ON LETTER Cure CMD signed onto a letter put forth by NORD to governors in all 50 states letting them know how essential telehealth is to the rare disease community. The letter also asks them to maintain or expand licensure flexibilities for care across state lines during the ongoing pandemic.

Dear UN Cure CMD signed on to support a request that the United Nations pass a resolution to promote greater social inclusion and protect the human rights of the rare disease community worldwide. You can share your story to support this campaign. Learn more here.

FIVE MINUTE ACTION ITEMS The House Ways and Means Committee recently passed their portion of the Build Back Better Act, which included language to amend the Orphan Drug Tax Credit (ODTC) in ways that would severely undermine efforts to ensure more patients have access to a safe and effective drug for their rare condition. Reach out to your legislators and ask them to leave the proposed changes to the Orphan Drug Tax Credit out of the final version of the Build Back Better Act! Congress is developing a $3.5 trillion legislative package which could include several health care policies that would impact the rare disease community. Ask Congress to support Rare Disease patients in the reconciliation package. Ask Congress to Cosponsor The Speeding Therapy Access Today, or STAT Act, H.R. 1730/S. 670 Ask Congress to support the Air Carrier Access Amendments Act (ACAAA). Ask Congress to support the Medical Nutrition Equity Act. The Newborn Screening Saves Lives Reauthorization Act passed in the House and has moved onto the Senate. Ask your Senators to cosponsor this bill.

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

‌ ‌ ‌ ‌ ‌