Improving care pathways for people living with rare bone diseases (RBDs): outcomes from the frst RBD Summit

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This is me, Joann. Living with a rare disease. Hiding for years in my DNA. It snuck up on me in the prime of my…
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I became aware of HPP when I was about 38 years old, but in retrospect I’ve been on this journey for a long time –…
When I found out I was pregnant, the thought of my innocent little baby having an ultra-rare disease never crossed my mind. I was asking…
The US Hypophosphatasia Foundation
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