Global DARE Foundation

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...

07/24/2026

Take advantage of every summer moment. If you’re part of the Refsum community, now’s a great time to experiment a bit as you enjoy travel, beach weather and warm nights. But don’t forget, that the Global DARE Foundation is always here for you. So, if you need to catch up on a few webinars you may have missed during Summer Spotlight, please visit our YouTube channel. If you’re looking for new ideas for dinner on warm evenings, check out the Refsum Diet Guide for new ideas. And don’t forget to share anything you found really easy and good. So many choices for summer. Check your email for upcoming news and events too. Things are happening every day.

07/03/2026

The Global DARE Foundation wishes you a Happy and Safe celebration of July 4th!
Enjoy the weekend and this special occasion!

06/28/2026

Summer Spotlight on Refsum Awareness is coming to a close today! But we’ll be bringing you updates and news all week as we look at all we’ve learned. Watch your email and social media.
And it was a great ULF Family Conference 2026 this weekend! The Adult Refsum Disease Research Roadmap Convening is the result of months of work by patients, caregivers, clinicians, and researchers who have come together to take an honest look at where the field stands today and what needs to happen next. We can’t wait to share more on this.
And if you didn’t get a chance to register or donate to the Summer Spotlight, please do that this weekend. Help us reach our goals for the future! Visit https://givebutter.com/summer-spotlight-2026-lpp0bo

06/24/2026

What if your participation today could help shape tomorrow's treatments for Adult Refsum Disease?
Take a few minutes from your busy day to watch this information rich video with Dianne Mitchell, Ph.D., Scientific Director, Global Dare Foundation and Dr. Wedad Fallatah. As Dr. Fallatah concludes her fellowship at Kennedy Krieger Institute and Johns Hopkins University, she reflects on what she’s learned from three years of Adult Refsum Disease research.
She discusses why natural history studies are so important, how patient participation helps drive rare disease research forward, and why understanding disease progression is critical to developing future therapies.
Whether you're newly diagnosed, a family member, caregiver, or a long-time member of the Refsum community, look into progress being made today—and the important role patients and families play in helping shape the future. Available on YouTube at https://www.youtube.com/watch?v=-0ky6UFH2Nc
Discover how research, participation, and hope come together to move the field forward. And your continued support for the Global DARE Foundation helps make this possible. If you haven’t yet donated to the Summer Spotlight for Refsum Disease please visit https://givebutter.com/summer-spotlight-2026-lpp0bo

DescriptionAs Dr. Wedad Fallatah concludes her fellowship at Kenne...

06/18/2026

What Good Clinical Care Looks Like in Adult Refsum Disease
1 ) Join leading clinicians as they discuss the essential elements of high-quality Refsum care—from diagnosis and dietary management to vision, hearing, mobility, and long-term health monitoring.
2) What Will It Take to Change Outcomes in Adult Refsum Disease?
Discover what needs to happen next—from building the research infrastructure needed to understand disease progression and measure outcomes, to advancing biomarkers, clinical trial readiness, and future therapies. Learn how today's investments in research, data, and collaboration are helping pave the way toward tomorrow's treatments—and why the entire Refsum community has a role to play in moving the field forward.
Watch your email and social sites for release of these two exciting webinars next week. And if you haven't yet Registered or Donated to the Summer Spotlight, please visit https://givebutter.com/summer-spotlight-2026-lpp0bo