Adults with rare syndromes or have children with rare syndromes

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I have alagilles syndrome and so does my youngest daughter. It affects the heart, liver and kidneys. It can be life limitiing depending on the severity of the syndrome. My younger sister also has the syndrome and required a liver transplant. My daughter and I have heart and kidney issues. Just looking to speak to others in the same boat, more of a shoulder to lean on kinda of thing.
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