The Cure CMD Advocacy Team works with the following rare disease organizations in the United States to support legislation that affects our community. • National Organization for Rare Disorders (https://rarediseases.org/)(NORD) • EveryLife Foundation for Rare Diseases (https://everylifefoundation.org/) • Rare Disease Legislative Advocates (https://everylifefoundation.org/rare-advocates/)(RDLA) • Global Genes:(https://globalgenes.org/) Allies in Rare Disease • Muscular Dystrophy Association (https://www.mda.org/get-involved/advocacy)(MDA)

• Participate in the advocacy efforts of Eurodis,(https://www.eurordis.org/) an organization committed to rare disease advocacy in 74 European countries. • Get involved with Rare Disease International,(https://www.rarediseasesinternational.org/) a global alliance of persons living with a rare disease. • Learn about the NGO Committee for Rare Diseases (https://www.ngocommitteerarediseases.org/)and their advocacy work. • Join the international community in raising awareness about rare diseases on Rare Disease Day (https://www.rarediseaseday.org/)

• Find out who represents you (https://www.govtrack.us/congress/members)in the U.S. Senate and House of Representatives • Learn how to build a relationship with your Senators and Representative(https://7b87a0cc-a9b1-4b92-b344-90353a6427fb.filesusr.com/ugd/134389_5e8d208e3f5640e49e8d67ee000cbf3a.pdf) • Learn about the federal Rare Disease Congressional Caucus (https://everylifefoundation.org/rare-advocates/rarecaucus/rarecaucus-members/)and ask your Senators and Representative to join if they haven't already • Use RDLA's Advocacy Tools (https://everylifefoundation.org/rare-advocates/advocacy-tools/)to learn more about how to advocate • Familiarize yourself with RDLA's legislative scorecard (https://everylifefoundation.org/rare-advocates/advocacy-tools/legislativescorecard/) • Participate in RDLA's monthly legislative webinars (https://everylifefoundation.org/rare-advocates/webinars/)to learn about current and proposed legislation that supports the Rare Disease community • Sign up for Rare Across America(https://everylifefoundation.org/rare-advocates/rare-across-america/) • Attend Rare Disease Week on Capitol Hill(https://everylifefoundation.org/rare-advocates/rare-disease-week/)

• Learn how to advocate in your state by checking out RDLA's State Advocacy Hub(https://everylifefoundation.org/rdla-state-advocacy-hub/?eType=EmailBlastContent&eId=623bcc93-0842-4071-8b99-3454c07e1338) • Join the RareAction Network (https://rarediseases.org/driving-policy/join-the-rareaction-network/)for your state • Check the NORD state report card (https://rarediseases.org/driving-policy/nord-state-report-card/)to see how well your state supports the Rare Disease Community • Learn about NORD's Project RDAC (Rare Disease Advisory Council) (https://rarediseases.org/wp-content/uploads/2023/07/NRD-2301-RDAC-Sell-Sheet_FNL-1.pdf)and see if one has been established in your state.

Join YARR (Young Adult Representatives of RDLA) (https://everylifefoundation.org/young-adult-representatives/yarr-leadership-academy/)if you are 18-29 years old Celebrate Rare Disease Day (https://rarediseases.org/rare-disease-day/)in February Attend RARE Advocacy Exchange (https://globalgenes.org/rare-advocacy-exchange/)virtual events Travel to the National Institute of Health (NIH) to attend Rare Disease Day at NIH (https://ncats.nih.gov/news-events/events/rdd)Participate in NORD's Patient and Family Forum(https://livingrare.org/)

• Create a One Pager telling your CMD story and share with your legislators. Use this template to get started.(https://docs.google.com/presentation/d/1PryMVKWASvJpKJn02hW58kNLtdzGQQRsdvwru75yRu0/edit?pli=1) • Use this fact sheet about CMD (https://9421ba31-e13a-4c68-81cd-c478504146e7.usrfiles.com/ugd/9421ba_463c1d5c20e94207a25428da4fe7f4e2.pdf)when you advocate with legislators.