My son was diagnosed with a rare disease two years ago. He has had twenty surgeries, countless doctors appointments and has been robbed of his voice. As a result I have willingly and aggressively plunged into the field of public health. I sit in classes these days where the people are talking in a language that sounds [...]
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Welcome to our site. This is a place for the people who love a child with a rare disease,disorder or illness… the child, parents, siblings, aunts, uncles, grandparents, guardians, cousins and beloved friends. I am the mother of a son with a rare pediatric disease, JORRP, and the last two years have been a journey for [...] |
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