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North America Patient Advocate Fellowship Alumni Program

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.


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


Alumni Group

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