The newly formed state agency, the Rare Disease Advisory Council (RDAC) is charged with providing advice on policies, access, equity, research, diagnosis, treatment, and education related to rare diseases. At our Legislative forum, citizen advocate Anne St. Martin, RDAC Executive Director Erica Barnes, and Representative Liz Reyer called for changes to insurance plans to improve care for people with rare diseases. Executive Director Barnes shares an update on this policy initiative.
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Playing the Game of Life on Hard Mode
March 25th is Cerebral Palsy Awareness Day. Alisha Srock shares some thoughts on how having cerebral palsy can be like “playing the Game of Life on Hard Mode—more difficult, but not impossible. …[P]laying on Hard Mode means you gain the skills to overcome. I’m glad because I learned things along the way. I learned patience; I learned problem-solving; I learned confidence; I learned perseverance; I learned flexibility.”
Rare Disease Insurance Access Transcript
Transcript accompanying the video 2023 MCD Legislative Forum: Rare Disease Insurance Access on YouTube. Featured in the post People with Rare Diseases Deserve Recognition and Support.
People with Rare Diseases Deserve Recognition and Support
Maureen Alderman, member of the Rare Disease Advisory Council and mother of Caroline, a child with a rare disease writes about the need for recognition and support. From the post: On February 28, we are so excited to celebrate Rare Disease Day. A day to reflect on what these patients have overcome. A day of gratitude for every doctor, physician assistant, nurse, lab tech, and medical professional that has touched the lives and futures of Rare Disease patients. A day to celebrate the research and developments going on in the Rare Disease community to create further treatment options. And maybe most importantly, a day of awareness for those not immediately impacted by Rare Disease.
“Love. Liberation. Belonging.” – A Good Day at the Capitol
For the first time since the pandemic shut us all down in 2020, the disability community was able to take their rightful place at the heart of the seat of power in Minnesota, the rotunda of the State Capitol for the 2023 Disability Advocacy Day. With a theme of “Love Liberation Belonging” the capitol was filled with uplifting, unified calls for inclusion, equity, and increased support for individuals with disabilities and service providers. We look forward to celebrating and implementing progressive bill signings at the end of session!
Accessible and Affordable Housing Transcript
Transcript accompanying the video 2023 MCD Legislative Forum: Accessible Affordable Housing on YouTube. Featured in the post Making It Easier to Find Affordable and Accessible Housing.