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Patient Advocate Fellowship Program

DIA 2013 49th Annual Meeting 

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 health care products. The DIA Patient Advocate Fellowship Program is designed to:

  • Increase the knowledge and understanding of patient groups about key issues central to patient-centered healthcare, biomedical research, and drug development
  • Develop the capacity of patient groups to advocate for change
  • Improve alliances between patient groups and other health care stakeholders
  • Stimulate cooperation, promote dialogue, and share best practices 

20 patient representatives, chosen through a competitive process, will have opportunities to develop, strengthen, and support collaborations with policymakers, industry, academia, and health professionals by taking part in all facets of DIA 2013 49th Annual Meeting. DIA's Annual Meeting provides a forum for sharing best practices, stimulating cooperation, and facilitating a two-way dialogue across the entire global health care community. 


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.  In 2012 and 2013, the program was expanded to include twenty (20) patient advocates.

Application Process for 2014
Application Announcement: December 1, 2013
Application Deadline: February 1, 2014
Remove application info from DIA website: February 1, 2013
Applicant Notification: March 1, 2014

Selection Process
Each year a Selection Committee is chosen to review applications, select program participants, and create and facilitate the Pre-Meeting Workshop.

Selection Criteria
Applicants must:

  • Represent a 501 (c)(3) organization in the United States or Canada that serves constituents with major diseases or rare/orphan diseases
  • Serve in a leadership role at a patient advocacy organization with executive, programmatic, policy or advocacy experience
  • Understand policy issues and the legislative process
  • Demonstrate proven track record around education and awareness activities
  • Engage in or is 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
  • Five (5) 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 2012 (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: New for 2013
This is a new initiative for the Class of 2013 coordinated by Mary Cobb, NORD and Colleen Zak ARPKD/CHF Alliance.  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

Fellows have been “matched” with a Patient Advocate Alumni who participated in the either the 2011 or 2012 DIA Fellowship Program.  Mentors will share their own experiences and tools that they used to navigate the Annual Meeting including:  what they found most useful, how they communicated to different stakeholders, what worked/what didn’t work, which sessions were most valuable, etc.   

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.


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
Ann's Place: the Home of I CAN
Coalition for Pulmonary Fibrosis
Dystonia Medical Research Foundation
Hepatitis Education Project
Hermansky-Pudlak Syndrome Network
International Cancer Advocacy Network
Leukemia & Lymphoma Society - Mass Chapter
Lymphatic Research Foundation
MitoAction
National Foundation for Celiac Awareness
NephCure Foundation
Program in Personalized Medicine & Targeted Therapeutics
Recurrent Respiratory Papillomatosis Foundation
Spinal Muscular Atrophy Foundation
The Michael J Fox Foundation for Parkinson's Research

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
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


Questions?

Donna.Mayer@diahome.org
© 2014 DIA