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"the power of one" means many things... One tiny person, my daughter Alaina, who completely changed my life 17 years ago when she was born with Alagille Syndrome (AGS), a rare multi-symptom genetic disorder. One bigger person, me, who founded the AGS Alliance to help Alaina as she struggled with the challenges of AGS. And one organization, the AGS Alliance, that has changed the lives of hundreds of people over the past 15 years. This book is a celebration of the one AGS Community of which we are all a part. -- Cindy Luxhoj Hahn, author and AGS Alliance president

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Alagille Syndrome Alliance
clhbook Tualatin, Oregon

The Alagille Syndrome Alliance was founded in 1993 as a support group for individuals and families with Alagille Syndrome (AGS), a rare multi-symptom genetic disorder. Today the Alliance serves over 500 families worldwide. We are growing, striving to extend our reach to more families, educate more health professionals, and participate in research initiatives, and tirelessly working to build a better life for everyone living with the challenges of AGS. Our mission is to be the main networking resource and source of information for people with AGS, their families, friends, and health care providers. We are also dedicated to increasing public awareness of AGS and supporting research efforts on behalf of the AGS Community.

Fecha de publicación  17 de agosto de 2008

Dimensiones  Apaisado estándar  22 páginas Papel estándar

Categoría  Organizaciones sin fines de lucro y beneficencia

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