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  • Rare Disease Day 2023

    Posted by danielle-dani-liptak on February 23, 2023 at 10:18 am

    Rare Disease Day is an observance held on the 28th of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families

    There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world. The MDA classified more than 40 different rare diseases—as all of the disorders under the MDA’s umbrella are classified as “rare”. definitions may differ from country to country, in the U.S., a disease is considered “rare” if it impacts fewer than 200,000 people, which encompasses almost 7,000 diseases. In fact, 1 out of every 10 people in the U.S. is currently living with a disease that is classified as “rare.”

    Sharing your story and increasing awareness of the diseases under MDA’s umbrella ensures that policymakers understand the needs of the neuromuscular disease community and the important role they play in helping accelerate the development of treatments and cures and ensuring access to critical programs and supports.

    Have you shared your story on your social media platforms about your rare disease? Do you have any questions about Rare Disease Day?

    gail-sullivan replied 9 months ago 2 Members · 1 Reply
  • 1 Reply
  • gail-sullivan

    Member
    July 14, 2023 at 10:17 pm

    I just received this today. So if rare disease day is in February, then I’ve missed it by months. i’m not sure why this came so late. But I am more than willing to share my story so if you could let me know if you still wanted then I’ll write it out.

     

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