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Patient Advocate Fellowship Program

Patient organizations are key stakeholders in helping DIA achieve its mission and vision. Through the Patient Advocate Fellowship Program, DIA is working to ensure that the "voice of the patient" is heard globally in every facet of the life cycle management of pharmaceuticals, medical devices, and related healthcare products. The program is designed to:

  • Develop, strengthen, and support patient collaborations with policy makers, industry representatives, academia and other healthcare stakeholders
  • Increase the knowledge and understanding of patient groups about key issues central to patient-centered healthcare, biomedical research, and drug development
  • Provide a forum for sharing best practices, stimulating cooperation, and facilitating a two-way dialogue across the entire global healthcare community
  • Integrate the patient voice by attending Annual Meeting program offerings, roundtable discussions, and   networking events

Program History
The inaugural launch of the Patient Advocate Fellowship Program took place at the 2011 DIA Annual Meeting in Chicago. Fifteen (15) patient advocates, who were chosen through a competitive process, attended the Annual Meeting to learn about medical product research and development, including where in the process their input may be practical and valuable.  They took part in all facets of the event, including speaking on panels, attending sessions and town hall meetings, roundtable discussions, and networking events.  The program has been expanded to include twenty (20) patient advocates.

Application Timeline
Application Announcement: November 1, 2013
Application Deadline: Friday, January 31, 2014
Applicant Notification: Week of March 1, 2014

Selection Criteria
20 patient representatives will be chosen through a competitive process. Applicants must:

  • Represent a 501(c)(3) organization based in the United States or registered charity in Canada
  • Be affiliated with a patient organization that serves constituents with major and/or rare diseases
  • Serve in a leadership role with executive, programmatic, policy, or advocacy responsibility
  • Understand policy issues and the legislative process
  • Demonstrate proven track record around education and awareness activities
  • Be familiar with activities related to clinical trials and drug development

Full Scholarships
Up to 15 candidates receive a FULL scholarship, which includes:

  • One (1) complimentary registration (non- transferrable)
  • One (1) roundtrip coach air/train travel  
  • Five (5) nights at a DIA designated hotel
  • Six (6) days per diem at $50/day maximum
  • One (1) year complimentary DIA e-Membership

Partial Scholarships
Up to 5 candidates receive a PARTIAL scholarship, which includes:

  • One (1) complimentary registration to attend DIA 2014 (non-transferrable)
  • One (1) year complimentary DIA e-Membership
Pre-Meeting Workshop

The Pre-Meeting Workshop is a day-long session designed to educate and actively engage the Patient Fellows in the drug development process.  Expert thought leaders facilitate interactive sessions to increase participants’ knowledge and understanding about key issues central to patient-centered healthcare.  

Mentoring
Fellows will be “matched” with Patient Advocate Program Alumni who will share their own experiences and tools they used to navigate the Annual Meeting.  The goals for the program include:

  • Connecting new Patient Advocate Fellows to Alumni Fellows who can guide them in effectively navigating the DIA Annual Meeting to meet individual objectives
  • Supporting Patient Fellows in setting clear objectives and defining an “Action Plan” to optimize their attendance at the meeting   
  • Assisting Patient Fellows in understanding and effectively communicating/connecting to the diverse stakeholders at the conference

Action Plan
The “Action Plan” is a one-page planning document that each Fellow will use to set both individual and organizational goals for before, during, and after the DIA Annual Meeting.  Mentors will assist Fellows in developing their “Action Plan” for the conference by outlining goals and objectives, strategies, and desired outcomes using the SMART process.


“At the DIA Annual Meeting, I was given access to a wealth of enlightening educational sessions that offered distinctive new perspectives from industry and drug companies, and policy makers and regulators.  I was also exposed to fascinating information about research positioning, study designs and precision medicine.  As a result, I better understand bringing drugs to market, fast-tracking medications, funding and incentives for all parties, consortiums, protocols and improving patient outcomes.”

– Colleen Zak, ARPKD/CHF Alliance

"DIA facilitates education and meetings with credible patient advocates to engage and collaborate with the industry, policymakers, healthcare professionals, academia and others. The Patient Advocate Fellowship Program is a well-managed, effective, disciplined and fun program."

– Jack Whelan, Author, Lecturer, Research Advocate, Cancer Warrior & Survivor

View video: 2013 DIA Patient Advocate Fellowship Program 

DIA 2013 49th Annual Meeting Participating Organizations

African-American Community Health Group of the Central Coast
AIM at Melanoma
Allagille Syndrome Alliance
American Cancer Society Cancer Action Network
Angioma Alliance
African-American Community Health Group of the Central Coast
AIM at Melanoma
American Cancer Society Cancer Action Network
Ann's Place: the Home of I CAN
Coalition for Pulmonary Fibrosis
Dystonia Medical Research Foundation
Hepatitis Education Project
Hermansky-Pudlak Syndrome Network
Leukemia & Lymphoma Society - Mass Chapter
Lymphatic Research Foundation
MitoAction
National Foundation for Celiac Awareness
Program in Personalized Medicine & Targeted Therapeutics
Spinal Muscular Atrophy Foundation
The Michael J Fox Foundation for Parkinson's Research

The NephCure Foundation

DIA 2012 48th Annual Meeting Participating Organizations

ARPKD/CHF Alliance
Averys Angels Gastroschisis Foundation
Canadian Organization for Rare Disorders
Cholangiocarcinoma Foundation
HepTREC
Huntington's Disease Society of America
International Cancer Advocacy Network
International WAGR Syndrome Association
Lupus Foundation of America
Mass General Cancer Center
Mastocytosis Society
MRSA Survivors Network
National Alliance for Medication Assisted Recovery
National Dysautonomia Research Foundation
Nueva Vida (Latin Women with Cancer)
Ovarian Cancer National Alliance
Soft Bones
The Sturge-Weber Foundation
United Nations Bone and Joint Decade
Vestibular Disorders Association

DIA 2011 47th Annual Meeting Participating Organizations

Alagille Syndrome Alliance
American Kidney Fund
Asthma and Allergy Foundation of America
Autoimmune Diseases Association
Hepatitis C Caring Ambassadors Program
International Pemphigus & Pemphigoid Foundation
Myasthenia Gravis Foundation
National Alopecia Areata Foundation
National Ataxia Foundation
Pancreatic Cancer Action Network
Parkinson's Disease Foundation
Spinal Muscular Atrophy Foundation
Susan G. Komen for the Cure
Uniting Against Lung Cancer
Women's Heart Foundation

Global Patient Initiatives

Patient organizations are key players in DIA’s mission to foster innovation to improve health and well-being worldwide. Find out how you can make an impact as a patient group representative.

Questions?
Contact Elizabeth Lincoln at Elizabeth.Lincoln@diahome.org