Our Story

From Rare to Recognized — Together, We’re Changing the Story of Refsum Disease

The Global DARE Foundation is dedicated to raising worldwide awareness and improving the quality of life for everyone affected by Adult Refsum Disease (ARD).
DARE stands for Defeat Adult Refsum Everywhere — and we DARE to believe there is a cure.

2025 has been a year of bold progress and global connection.

Here are a few highlights:

A New Scientific Director: In January, Dr. Dianne Mitchell joined Global DARE as our Scientific Director, bringing new ideas and expertise to our research strategy.

Advancing Research & Care:

This year we launched The PATH Project — Phytanic Acid Treatment and Hope — a groundbreaking effort to unlock omega oxidation and create the first therapeutic strategy for Adult Refsum Disease. The PATH is one of several critical research projects underway to find new treatments for Refsum.

The Refsum Natural History Study planning has officially launched — a major milestone and the first formal effort to understand how Refsum Disease changes over time. Conducted across leading centers in Boston, London, and Leipzig, the study will welcome global participation so that every Refsum voice can help shape the path to future clinical trials.

We’ve expanded our global care network with the new Refsum Center of Excellence in Germany at Leipzig University Hospital. This partnership strengthens access to expert care in Germany and deepens collaboration among clinicians and researchers across Europe.

Under the leadership of our Scientific Director, Dr. Dianne Mitchell, Global DARE’s Scientific Roadmap is now in full motion. Six focused workgroups are advancing key research priorities — from uncovering disease mechanisms to exploring potential treatments for Refsum Disease.

Our Patient Collaborator Program ensures that those living with Refsum Disease are active partners in shaping the research that impacts their lives. By embedding patient perspectives at every stage, we’re building a truly collaborative and community-driven research model.

Refsum Without Borders:

President Kristie DeMarco and John DeMarco traveled across Thailand, Bangkok, Vietnam, Singapore, Australia, Romania, Malaysia and Japan connecting with medical experts, hospitals, and Refsum families to raise awareness and foster faster diagnosis. These journeys built new partnerships and strengthened our global community exponentially.

Global Presence at Euretina 2025- Spreading Global Awareness
In July, Global DARE hosted a booth at the Euretina Congress, one of the world’s largest gatherings of ophthalmologists and retina specialists. In just three days, we made hundreds of vital connections to help advance recognition and understanding of Refsum Disease.

A Well-Deserved Honor
Congratulations to Kristie DeMarco, recipient of the Legacy Award from the United Leukodystrophy Foundation (ULF) for her leadership and dedication to the Refsum community.

None of this progress would be possible without you — our community, supporters, and Refsum family.
Your generosity fuels the hope, research, and outreach that make real change possible.

Our Annual Appeal begins November 15, and we’re asking for your help to keep the momentum going.
Please consider making a donation — or sharing our story — to bring us closer to a world where Refsum Disease is no longer rare, but recognized and understood.

Thank you for being part of this journey.
Please contact us by email (info@globaldarefoundation.org) if you have any questions.

Watch this short video to learn more about Refsum Disease and the work of Global DARE Foundation.

2025 Global DARE Annual Appeal

By Global DARE Foundation

2025 Global DARE Annual Appeal

From Rare to Recognized — Together, We’re Changing the Story of Refsum Disease

Team Members