Know Rare Connect - Living With Myositis
In this webinar, journalist Lindsay Guentzel shares her journey with dermatomyositis, a rare autoimmune disease.
www.knowrare.com/blog-v2/living-with-myositis-lindsay-guentzel-webinar-know-rare-connect
Once Upon a Gene
"As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality and through the isolation I was feeling, I realized something that should have been simple but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone.
And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, bonded, and grown. These are the stories of children who have been told that they cannot, and that have proved the world wrong."
- Effie Parks
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