By Jennifer Schleman, SVP Communications & Governance

On Wednesday, May 31, the National Health Council (NHC) hosted its Inaugural International Patient Forum. This members-only event explored the international nature of health care advocacy, even for patient groups that operate primarily in the United States.

The theme, How the U.S. Patient Community Can Be Informed, Involved, and Influential in International Dialogues and Decisions, offered NHC patient group and nonprofit members the opportunity to share information and strategic thinking on international patient issues.

Donna Cryer, President & CEO of the Global Liver Institute, joined NHC CEO Randy Rutta for a kick-off conversation that focused on the importance of patient advocacy in a global context.

Cryer credited her staff across the globe in challenging her to think beyond the U.S. “What does access look like internationally in the context of the community and how can we scale solutions for places around the world – to have the largest use?” she said.

A panel of NHC member leaders described their international experience in support of patients globally, identifying challenges, offering successful models, and highlighting opportunities they see in a global context. Panel members included:

• Cyndi Zagieboylo, President & CEO, National Multiple Sclerosis Society;
• Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases;
• Pat Furlong, Founding President & CEO, Parent Project Muscular Dystrophy; and
• Celina Gorre, Chief Executive Officer, WomenHeart.

Among the key takeaways from panelists: that NHC patient groups large and small have extensive experience globally, that partnering with other patient groups in the U.S. and abroad is valuable and doable, and, that patient groups are open to sharing best practices.  

Lisa Butler, President & CEO of GBS│CIDP International and Board Member of the NHC, moderated an open discussion among Forum participants who shared their experience and perspectives. Topics explored included:

• International use of materials developed in the U.S.
• Engagement with the WHO and other international government agencies
• International research guidelines
• Translation of materials
• Engaging international volunteers

A video of the International Patient Forum can be found on the NHC website. And please save the date for the NHC’s second International Patient Forum on October 25, 2023.