We are always interested in meeting new families with rare disorders. There is something comforting about finding others who can relate to the trials and tribulations of living with a rare disorder. We hope that we can bring together multiple families for interaction with each other and for our children. As parents, we did not sign up to become our own "doctors" but yet we find ourselves teaching, learning, educating and advocating for our precious offspring. Together we can feel the frustrations of living with a rare disorder and comfort each other with our stories and our lives. "TOGETHER we can STAY STRONG".
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