The Patient Advocate Fellows "Class of 2011" and "Class of 2012" have combined to form the Patient Advocate Fellowship Alumni Program (PAFAP) in North America. Thirty-five former Fellows meet monthly by teleconference to continue the conversation started while on-site at the DIA Annual Meeting. A top priority is the formation of a Patient Advocate Community (PAC) that will enable the group to fulfill its vision and goals.

Vision

Nurture a growing community of Patient Advocate Fellows through networking, information exchange, sharing of best practices, and multidisciplinary collaboration so as to increase their capacity to promote patient-centered health care and advocate for change to the mutual benefit of patient groups, government, industry and academia.

Purpose and Goals

The Patient Advocate Fellowship Alumni Program (PAFAP) is a self-enabling forum whose goals are to:

• Improve alliances between patient groups and other health care stakeholders
• Increase the capacity of patient groups to advocate for change
• Stimulate cooperation, promote dialogue, and share best practices
• Develop, strengthen, and support collaborations with policy makers, health professionals, industry representatives, and academia

Duties and Responsibilities 

• Develop a community of members for the purpose of networking, information exchange and working together to achieve common goals that foster the mission of DIA
• Increase the knowledge and understanding of patient groups, government, and industry about key issues central to the promotion of patient-centered health care
• Identify topics of interest for programs and educational offerings
• Share best practices and lessons learned
• Identify opportunities for collaboration
• Mentor future Fellows attending DIA events
• Nurture relationships between alumni

On October 2012, James Valentine and Andrea Furia-Helms provided overviews of the FDA Patient Network and FDA Patient Representative Programs to the Alumni Group.

View presentation

  

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Alumni Group

• Cindy Hahn, President & CEO; Alagille Syndrome Alliance
• Nikia Okoye, Director of Government Relations; American Kidney Fund
• Colleen Zak, CEO; ARPKD/CHF Alliance
• Liana Burns, Policy and Programs Assistant; Asthma and Allergy Foundation of America
• Virginia Ladd, President & Executive Director; Autoimmune Diseases Association
• Kayte Thomas, CAO; Averys Angels Gastroschisis Foundation
• Maureen Smith, Patient Advocate and Board Member; Canadian Organization for Rare Disorders
• Marion Schwartz, Director of Advocacy; Cholangiocarcinoma Foundation
• Lorren Sandt, Executive Director; Hepatitis C Caring Ambassadors Program
• Amy Jessop, Director; HepTREC
• Jane Kogan, Programs, Services and Advocacy Manager; Huntington's Disease Society of America
• Marcia Horn, President and CEO; International Cancer Advocacy Network
• Molly Stuart, CEO; International Pemphigus & Pemphigoid Foundation
• Kelly Trout, Health Consultant; International WAGR Syndrome Association
• Jessica Gilbart, Director of Patient Services; Lupus Foundation of America
• Carole Seigel, Patient Advocate; Mass General Cancer Center
• Kelli Foster, Pediatric Co-Chair; Mastocytosis Society
• Jeanine Thomas, Founder and President; MRSA Survivors Network
• Jurgen Venitz, Associate Professor; Myasthenia Gravis Foundation
• Joycelyn Woods, Executive Director; National Alliance for Medication Assisted Recovery
• Susan Hagen, Patient Services Director; National Ataxia Foundation
• Daniel Smith, President; National Dysautonomia Research Foundation
• Fedra Sanchez, Senior Programs Manager; Nueva Vida (Latin Women with Cancer)
• Susan Leighton, National Program Director; Ovarian Cancer National Alliance
• Anitra Talley, Director of Patient Services; Pancreatic Cancer Action Network
• Veronica Todaro, Director of National Programs; Parkinson's Disease Foundation
• Jane Castello, Director of Operations; Soft Bones
• Dione Kobayashi, Associate Director, Research; Spinal Muscular Atrophy Foundation
• Karen Ball, President and CEO; Sturge-Weber Foundation
• Cheryl Jernigan, Community Cancer, Health & Research Advocate; Susan G. Komen for the Cure
• Amye Leong, Spokesperson/Author; United Nations Bone and Joint Decade
• Holli Kawadler, Scientific Program Director; Uniting Against Lung Cancer
• Cynthia Ryan, Executive Director; Vestibular Disorders Association
• Bonnie Arkus, Executive Director; Women's Heart Foundation