Let's make sure we're heard this year!!!!! I will add photos of Haven to their site soon!
To read about Rare Disease Day click HERE
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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