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Laura, Mother of Alden
Laura Will is a nurse practitioner and mother to Alden who has diffuse bilateral PMG. Since Alden’s diagnosis, Laura has studied and been practicing mindfulness based therapies. She has also created an online support group for parents of medically fragile and/or disabled children.
Tali, Mother of Sarena
Tali's youngest daughter, Sarena, was diagnosed with Dravet Syndrome at just 1 year old. Since then, Tali has become an advocate for Dravet Syndrome Awareness, creating a chapter of the Dravet Syndrome Foundation in Israel where she lives. When she is not advocating for Sarena, she speaks to other rare parents worldwide who need help.
After my son’s diagnosis, I had so many questions and didn’t know where to turn for answers. Know Rare provided incredible support by connecting us to the right specialists. Can’t thank them enough for giving us hope for the future!
Fran, Mom of Diego
Diagnosed with Propionic Acidemia
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