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5 Things to Know About the Rare Disease Community
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My daughter is one of the 470 people in the world diagnosed with the rare disease DDX3X syndrome. She received this diagnosis in 2017 after three long years of being stuck in the rare disease diagnostic odyssey.
I did not know it at the time, but the day my daughter was diagnosed was also the day I became a rare disease advocate. Looking back, my initial advocacy efforts were researching, connecting and collaborating.
Fast forward to three years later and I just completed my second Rare Disease Advocacy Week in Washington, D.C. speaking to members of Congress about the important issues impacting the rare disease community!
Read more on themighty.com
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