Rare Disease Day Video Flashbacks…
This year World Rare Disease Day is Saturday February 29, 2020.
As we prepare to do what we can to raise awareness of Rare Diseases… I’m reblogging this post with some videos Meghan created as a younger person with Cowden’s.
Keep in mind, the most recent here was 2017.
World Rare Disease Day is February 28th. People all over the world will work to raise funds and awareness for over 7,000 Rare Diseases worldwide. In our house things are buzzing, as we prepare to teach the world a bit more about Cowden’s Syndrome.
There will be so much time to write. Soon. Right now we are preparing for Rare Disease Day 2017 and “Jeans for Rare Genes 3.” All the preparing brought me back to her video from last year. And then I looked at the year before, and the one before that. And I was struck by how much she has grown, not only in her technological ability, but also as an advocate, and a voice, and a human.
There will be no video this year. It was time for a change of pace. But, I thought it appropriate to post these here, now. She keeps me grounded…
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