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Patient Engagement Community

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Chairperson. Marcia K. Horn, International Cancer Advocacy Network

Mission. To improve health outcomes with patient engagement and representation across all disciplines within DIA

The Patient Engagement Community will work toward this mission though a set of objectives that include:

  • Sharing what works best for patients
  • Promoting patient-centered outcomes
  • Initiating and promoting authentic collaborations with patients throughout all aspects of drug development, as well as  health care policy and practice.

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Founding Member Organizations

  • Alagille Syndrome Alliance
  • American Kidney Fund
  • ARPKD/CHF Alliance
  • Asthma and Allergy Foundation of America
  • Autoimmune Diseases Association
  • Averys Angels Gastroschisis Foundation
  • Canadian Organization for Rare Disorders
  • Cholangiocarcinoma Foundation
  • Hepatitis C Caring Ambassadors Program
  • HepTREC
  • Huntington's Disease Society of America
  • International Cancer Advocacy Network
  • International Pemphigus & Pemphigoid Foundation
  • International WAGR Syndrome Association
  • Lupus Foundation of America
  • Mass General Cancer Center
  • Mastocytosis Society
  • MRSA Survivors Network
  • Myasthenia Gravis Foundation
  • National Alliance for Medication Assisted Recovery
  • National Ataxia Foundation
  • National Dysautonomia Research Foundation
  • Nueva Vida (Latin Women with Cancer)
  • Ovarian Cancer National Alliance
  • Pancreatic Cancer Action Network
  • Parkinson's Disease Foundation
  • Soft Bones
  • Spinal Muscular Atrophy Foundation
  • Sturge-Weber Foundation
  • Susan G. Komen for the Cure
  • United Nations Bone and Joint Decade
  • Uniting Against Lung Cancer
  • Vestibular Disorders Association
  • Women's Heart Foundation

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