Patient Initiatives

The DIA Patient Advocate Fellowship Program is designed to do the following:

  • Develop, strengthen, and support patient collaborations with policy makers, industry representatives, public health authorities, academia, and other healthcare stakeholders.
  • Improve alliances between patient groups and other healthcare stakeholders.
  • Increase knowledge and understanding of issues central to the promotion of patient-centered healthcare, biomedical research, and therapy development.
  • Provide a forum for sharing best practices, stimulating cooperation, and facilitating a two-way dialogue across the entire global healthcare community.
  • Enhance the capacity of patient advocates to respond to changes in drug development and health care delivery.
  • Integrate the patient voice by attending Annual Meeting program offerings, roundtable discussions, and networking events.

In addition to opening the Annual Meeting up to patient advocates and representatives, the Fellowship Program provides additional opportunities to network, share information, and learn through

  • Tours of the exhibit hall
  • Panel discussions with representatives from industry and regulatory
  • A dedicated patient advocate space in the exhibit hall for displaying information and meeting with other attendees
In addition, the Fellows attend an all-day workshop designed specifically for them held the Sunday before the Annual Meeting.

After the Annual Meeting, Fellows continue their involvement with DIA.

 

Past Patient Advocate Fellows have come from
African-American Community Health Group of the Central Coast
AIM at Melanoma
Alagille Syndrome Alliance
American Cancer Society Cancer Action Network
American Kidney Fund
Angioma Alliance
Ann's Place: the Home of I CAN
Answering TTP Foundation
ARPKD/CHF Alliance
Asthma and Allergy Foundation of America
Autoimmune Diseases Association
Averys Angels Gastroschisis Foundation
Batten Disease Support and Research Association
Canadian Organization for Rare Disorders
CFIDS Association of America
Cholangiocarcinoma Foundation
Coalition for Pulmonary Fibrosis
Connecticut Advocates for Parkinson's
CrossLink Medical Resources
Dravet.ca and Dravet.org
Dystonia Medical Research Foundation
ECD Global Alliance
Foundation for Prader-Willi Research
Foundation for Sarcoidosis Research
Hepatitis C Caring Ambassadors Program
Hepatitis Education Project
HepTREC
Hermansky-Pudlak Syndrome Network
Huntington's Disease Society of America
International Cancer Advocacy Network
International Pemphigus & Pemphigoid Foundation
International WAGR Syndrome Association
Kennedy's Disease Association
Leukemia & Lymphoma Society - Mass Chapter
Lupus Foundation of America
Lymphatic Research Foundation
Mass General Cancer Center
Mastocytosis Society
The Michael J Fox Foundation for Parkinson's Research
MitoAction
MRSA Survivors Network
Myasthenia Gravis Foundation
Myotonic Dystrophy Foundation
National Alliance for Medication Assisted Recovery
National Ataxia Foundation
National Dysautonomia Research Foundation
National Foundation for Celiac Awareness
National Foundation for Ectodermal Dysplasias
The NephCure Foundation
Nueva Vida (Latin Women with Cancer)
Ovarian Cancer National Alliance
Pancreatic Cancer Action Network
Parent Project Muscular Dystrophy
Parkinson's Disease Foundation
Program in Personalized Medicine & Targeted Therapeutics
Soft Bones, Inc.
Spinal Muscular Atrophy Foundation
Sturge-Weber Foundation
Susan G. Komen for the Cure
TargetCancer
Tuberous Sclerosis Alliance
Tuberous Sclerosis Canada Sclerose Tubereuse (TSCST)
United Nations Bone and Joint Decade
Uniting Against Lung Cancer
US Too International
Vestibular Disorders Association
Women's Heart Foundation