In 2022, Cure CMD's Legislative Advocacy Team continued to support legislation that provides access to healthcare, education, employment, travel, and funding for research. We did this by joining other rare disease organizations to express our support for specific legislation, by providing opportunities for our community to contact their Members of Congress, and by participating in advocacy events such as Rare Disease Week.
We are excited by the progress that was made at the federal level to reauthorize the Prescription Drug User Fee Act (PDUFA), improve the Accelerated Approval pathway for innovative therapies, increase research funding to develop new treatments for rare diseases, extend telehealth flexibilities for two more years, and much more. Though not passed, we continue to voice our support for the ABLE Age Adjustment Act and SSI Savings Penalty Elimination Act — both pieces of legislation will go a long way in ensuring those with a disability can achieve economic independence.
Will you join us in 2023 in reaching out to your lawmakers? Your CMD story matters, and your elected officials need to know your story and what proposed legislation would improve your life. Email firstname.lastname@example.org to get involved today!
"Anyone can become a Rare Disease Legislative Advocate — sharing your or your child's story and a desire to drive policies that positively impact congenital muscular dystrophy are the only qualifications needed to be an instrument to change." — Rachel Alvarez, Cure CMD Executive Director