At the beginning of the drug development pipeline are patients. As the scientific director of the Solve ME/CFS Initiative, I understand that I advocate for the patients in many important circles – one of them being the scientific community and drug development circles. In February of this year I applied for a patient advocacy fellowship to the 2014 DIA 50th Annual meeting “Celebrate the Past – Invent the Future”. This meeting provides a wonderful opportunity to meet with people from around the world, share knowledge, network, and build new relationships.
The 50th DIA annual meeting is the largest multidisciplinary event that brings together a community of life sciences professionals at all levels and across all disciplines involved in the discovery, development, and life cycle management of medical products all with a common goal to foster innovation that will lead to the development of safe and effective medical products and therapies to patients. DIA has over 18,000 members, connecting people throughout the world that are involved in drug development – from patients to insurance payers.
After last years ME/CFS FDA workshop, I was particularly excited to apply for this fellowship and have the opportunity to participate in a meeting that was looking toward the future. In March I was notified that I was selected for a full scholarship to represent the Solve ME/CFS Initiative and our community. I see this as an opportunity to tell an important crowd of people about the opportunities available for ME/CFS. With the publishing of FDA draft guidance for ME/CFS drug development, the timing is fortuitous, allowing me to learn about the successes and challenges others have faced in drug development and developing the regulatory framework for complex and poorly understood chronic disease.
There was a competitive slate of over 40 applicants. While I am representing the Solve ME/CFS Initiative, there are the 16 other organizations that make up the Class of 2014:
- Answering TTP Foundation
- Batten Disease Support and Research Association
- Connecticut Advocates for Parkinson’s
- CrossLink Medical Resources
- Dravet.ca and Dravet.org
- ECD Global Alliance
- Foundation for Prader-Willi Research
- Foundation For Sarcoidosis Research
- Kennedy’s Disease Association
- Myotonic Dystrophy Foundation
- National Foundation for Ectodermal Dysplasias
- Parent Project Muscular Dystrophy
- Tarlov Cyst Disease Foundation
- Tuberous Sclerosis Alliance
- Tuberous Sclerosis Canada Sclerose Tubereuse
The meeting officially began on Monday, June 16th with a jam-packed program with over 21 tracks and more than 260 educational offerings. You can read the day-one summary HERE and a summary of Day two HERE. In addition to the main program, fellows participated on Sunday, June 15 in a one-day Patient Advocate Pre-Workshop with renown thought leaders designed to:
- Develop, strengthen, and support patient collaborations with key policy makers, health professionals, industry representatives, and academia
- 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 healthcare stakeholders
- Stimulate cooperation, promote dialogue, and share best practices
I am very excited to have this opportunity to network, listen and learn from global leaders from industry, regulatory agencies, academia and the other patient advocate fellows. I am keenly interested in learning how the other patient advocate fellows were able to interest and attract drug developers to work on their diseases. This will help the Solve ME/CFS Initiative build innovation supply chain making ME/CFS attractive for drug development. I look forward to sharing with you what I hear and learn as we work together to solve ME/CFS.
Suzanne D. Vernon, PhD
Scientific Director, Solve ME/CFS Initiative