The Emotional Effects of Living with a Chronic Rare Disease – (2020 Soft Bones Virtual Meeting)

They are identical mirror twins who overcame all odds to survive their arrival. Isabella & Julia were born at 35 weeks and 6 days. Brought…
Adrianna Tuomi, a licensed clinical social worker and Soft Bones Community Member and Region Lead will be presenting a webinar on the psychological effects of…
WRITTEN BY JULIA C. If you sat in a class with me, there are a few things you might notice right away. I talk a…
Hello, my name is Cheryl Jackson and my journey with HPP began last December when I was diagnosed at the age of 48, but as…
Hi, my name is Laura Vondrick and I’m writing on behalf of my daughter Leia who was diagnosed with HPP in July 2020. Our family…
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