Global DARE Foundation

10/06/2026

Make Your Giving Go Further on DAF Day — October 8

Do you have a donor-advised fund (DAF)? DAF Day is a great time to put those charitable dollars to work for people living with Adult Refsum Disease.
By recommending a grant to the Global DARE Foundation, you can help advance critical research, expand awareness, strengthen patient resources, and move us closer to better treatments for Refsum Disease. It’s easy to make an impact. Simply contact your DAF sponsoring organization and recommend a grant to Global DARE Foundation.

This DAF Day, turn funds you’ve already set aside for charitable giving into progress, possibility, and hope for the Refsum community.
October 8 — Put your DAF to work for Refsum.

10/01/2026

Live (almost) from EURETINA 2026 in Vienna!
EURETINA brings together leading ophthalmologists, researchers, and healthcare professionals from around the world to share the latest advances in retinal disease and vision care. For Global DARE, it’s an exciting opportunity to put Adult Refsum Disease on the radar, build new relationships, and explore collaborations that can help move Refsum research and care forward.
We’re looking forward to great conversations, new connections, and new possibilities.
Attending EURETINA? Come say hello at Booth D55. We can’t wait to meet you!

09/30/2026

Building Awareness. Expanding Horizons. Creating Collaborations.
That’s what Global DARE Foundation is bringing to EURETINA 2026 in Vienna!
October 1–4, 2026
VIECON – Vienna Congress & Convention Center
Visit us at Booth D55

EURETINA brings together leading ophthalmologists, researchers, and healthcare professionals from around the world to share the latest advances in retinal disease and vision care.For Global DARE, it’s an exciting opportunity to put Adult Refsum Disease on the radar, build new relationships, and explore collaborations that can help move Refsum research and care forward.
We’re looking forward to great conversations, new connections, and new possibilities.
Attending EURETINA? Come say hello at Booth D55. We can’t wait to meet you!

09/28/2026

Global DARE is headed to Vienna!
We’re excited to be attending the 26th EURETINA Congress in Vienna—and if you’ll be there, we’d love to see you at the Global DARE Foundation Booth D55!
EURETINA brings together leading retina specialists, ophthalmologists, researchers, and vision experts from around the world to share ideas and explore the latest advances in retinal medicine and research. For Global DARE, it’s an important opportunity to raise awareness of Adult Refsum Disease, build new relationships, and connect with experts who can help move Refsum research forward. Every new conversation and collaboration has the potential to bring us another step closer to better treatments and a brighter future for people living with Refsum.
EURETINA 2026 | Vienna
Visit Global DARE Foundation at Booth D55

09/21/2026

Seven years of collaboration—and finally, the chance to meet in person!
Refsum Without Borders! We had a wonderful experience visiting the team at University Medical Center (UMC) in Amsterdam after working together online for the past seven years.
Our visit gave us an opportunity to learn more about their important work and spend time with an extraordinary group of clinicians and researchers who share Global DARE Foundation’s commitment to advancing Refsum disease research and care.
A heartfelt thank you to Professor Sacha Ferdinandusse, Professor Fred Vaz, Dr. Marc Engelen, Professor Ronald Wanders, and Corrie Timmer for welcoming us, sharing your expertise, and spending the day with us.
We are grateful for this longstanding collaboration—and excited about what we can continue to accomplish together for the Refsum community.

09/01/2026

Refsum Without Borders is more than awareness building with our Refsum community around the globe. It’s discovery, sharing and bonding together to find more answers for Refsum disease and more people impacted by the disease. Just a few scenes from a visit with a Global DARE Patient Collaborator in France. And a visit with Michel Veys and family in Ghent, Belgium, plus a wonderful visit with Dr. Bart LeRoy, part of Global Dare Foundation Medical and Scientific Advisory Board. Let’s keep this momentum going!

08/21/2026

Don’t miss the latest findings from the Global DARE Foundation's food testing program coming out this September. These bring together our work and collaboration between metabolic dietitians, researchers and the Foundation.
As we begin planning the 2027 food testing program, we'd like to hear your suggestions for individual food items that you'd like to see tested.
Please email [email protected] with your suggestions for items not already tested. Thank you for your continued support of the Refsum food testing and diet guide. It makes meal choices easier for everyone with Refsum!

08/03/2026

Refsum In the News!
Don’t miss this critical report and podcast, the JIMD Reports Shortcast, that takes a deeper dive in the Refsum diet and the link to phytanic acid. Huge thanks to Sarah Firman for explaining how fluctuations in energy and carbohydrate intake, weight loss and more can impact phytanic acid levels upwards, and how targeted dietary interventions can be game changing.
Listen to the Shortcast and read the paper: https://lnkd.in/eQfduHqw

Dietary management of adult Refsum disease is about more than restricting phytanic acid. In this new JIMD Reports Shortcast, Sarah Firman explains how inadequate energy and carbohydrate intake, weight loss and catabolism can drive phytanic acid levels upwards and how targeted dietary interventions c...

07/30/2026

Why not make TWICE the impact as a monthly donor to the Global DARE Foundation?
When you join the Global DARE Impact Circle as a monthly donor, your first year of giving will be matched dollar-for-dollar. That means every monthly gift you start now will make twice the difference—fueling research, education, and care for people living with Refsum disease around the world. It only takes a few minutes to set up. And it creates something lasting. Learn more about the Impact Circle @ https://tinyurl.com/2u2m3r8m

A recurring monthly gift provides dependable support for the work happening evry day—from accelerating research to expanding patient resources and raising awareness around the world.
Give Monthly!
Join the Global DARE Impact Circle today and make change happen.

07/24/2026

Sharing the Spotlight -On-Refsum-Disease.

Spotlight on Refsum Disease 👁️‍🗨️ Refsum disease is one of the few inherited retinal diseases with specific management approaches that may help support long-term health. A specialized diet low in phytanic acid is an important part of managing the condition. Foods such as beef, lamb, cert...