Global DARE Foundation

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Global DARE Foundation

The Global DARE foundation is a global community of individuals, caregivers, healthcare professional

06/01/2026

🍫 Did you know that dark chocolate gets a GREEN LIGHT on the Refsum Diet Guide? That's right! And it's just one of over 100 foods and ingredients included in this valuable resource for people living with Refsum Disease.
Managing phytanic acid intake is an important part of treating Refsum Disease, and the Refsum Diet Guide makes food choices easier with our simple Stoplight System—showing which foods are "Go," "Caution," or "Avoid."
🌟 We have a challenge for you during our Summer Spotlight on Refsum Awareness!
Try following the Refsum Diet Guide for a day—or even three—and discover some new favorites. Then share your experience with us. What surprised you? What delicious foods did you enjoy? Your tips could help others in the Refsum community. Between now and June 22, send your comments to mailto:[email protected] Together, we can learn from one another and make living with Refsum a little easier—and tastier!

And don't forget to Register or Donate for the Summer Spotlight on Refsum Awareness go to:
https://givebutter.com/summer-spotlight-2026-lpp0bo

05/29/2026

Do you know what it takes to create a great FUNdraiser? Passion and a desire to help others are the two main ingredients. Summer Spotlight on Refsum Awareness is your chance to gather your friends, family, and organize an event around something you love. At the same time, you'll be raising critical funds for future research on a rare disease, Refsum. Summer Spotlight is coming up on June 12-28. Start planning now for an easy and FUN way to do something new for the summer. To create your own fundraising page, or just Register for Summer Spotlight go to ://givebutter.com/summer-spotlight-2026-lpp0bo. For the Fundraising Toolkit where you'll get step by step ideas, see https://www.defeatadultrefsumeverywhere.org/donate

05/26/2026

News Flash – Double Your Donation Today!
Did you know that when you register or donate to the Summer Spotlight on Refsum Awareness event coming up on June 12-28, your funds will be MATCHED by the Global DARE Foundation Board of Directors up to $10,000.

Think about it. $50 = $100; $250 = $500; $1,000 = $2000. What an opportunity to make a difference for Refsum while making a stronger impact.

Visit Givebutter.com for details about the Summer Spotlight and Register or Donate.

05/22/2026

What’s for Dinner?
It’s an almost summer holiday weekend. You might be relaxing with friends and planning a few summer meals. Where do you start? If you, or a loved one, are living with Refsum you know how important it is to understand what foods keep phytanic acid levels down and make Refsum more manageable. The Global DARE Foundation wants to hear about your favorite recipes using the Diet Guide, and invites you to share one or two of your recipes during our Summer Spotlight. Make it easier for others by sharing what you’ve tried and loved.
Send us your favorite recipe(s) by June 16, and a photo if you can! And if you have ideas for breakfast and lunch, even better! We’ll share them with all during the Summer Spotlight plus make them available on the website. Email to [email protected]
And to Register or Donate for the Summer Spotlight on Refsum Awareness, https://givebutter.com/summer-spotlight-2026-lpp0bo

05/18/2026

Summer Spotlight on Refsum Awareness is happening June 12–28 and we want you with us!
Join the Global DARE Foundation as we raise awareness, support families living with Refsum disease, and help fund research toward better treatments and a 2030 clinical trial.
The Global DARE Foundation is the only organization solely dedicated to Refsum disease—funding awareness, patient support, research, and progress toward future clinical trials.
We can’t do it without you. And thanks to a special matching opportunity, every donation made during the event will be matched up to $10,000.
Be part of the movement. Register or donate, and help shine a spotlight on Refsum awareness today.

05/04/2026

Life is filled with challenges, and many people live with issues that are invisible to others. But you don’t have to go through it alone. It’s okay to ask for help, and to offer it too, with kindness and care.
Rare diseases often tax our mental health. The stress and concern can feel isolating. But the Global DARE Foundation is here to support those living with Refsum disease - individuals, families, and all those who love and care for them. Take advantage of our resources at www.defeatadultrefsumeverywhere.org

04/28/2026

If you have a rare disease, What are YOU Grateful for Today?
It might be another day to make a difference, volunteer your expertise, enjoy time with friends and support groups, take a walk in the forest or on the beach, and just breath in the contentment of the moment. We all need that.
Pictured here are one of our most active community members, Alan Gunzburg, with his guide dog; a woman absorbing the salt air; a beautiful dinner to be enjoyed, our Global DARE Team at the Euretina2025 Congress spreading the word, and a collage of what Global DARE Foundation can mean in your life. If you have a rare disease like Refsum, grab every day and remember what you are grateful for. It can make such a difference in your day. Follow us at www.defeatadultresumeverywhere.org.

04/21/2026

When you live with a rare disease like Refsum, your mental health can sometimes suffer from stress. But there are lots of small things that can help keep your spirits strong. Like spending time outdoors, or volunteering for a good cause. And being part of the Global DARE Foundation’s Refsum community groups on Facebook or Google is an excellent way to voice your questions, concerns, and even your tips for staying positive. It’s a private and safe community for sharing. Learn more about them here: https://www.defeatadultrefsumeverywhere.org/refsum-community-connection

04/01/2026

Life with a rare disease isn’t just challenging—it’s often isolating. And for those living with Refsum Disease, the journey comes with its own unique hurdles.
Helpful Tip: Don’t do it alone. The right support system—family, friends, or a community that truly understands—can make everyday decisions feel less overwhelming, from managing diet to navigating symptoms.
You don’t have to face this journey by yourself. Becoming part of the Global DARE Foundation connects you to the only organization solely dedicated to fighting Refsum Disease.
Join the registry. Sign up for updates. Stay connected to the progress being made—and the hope being built.
Because together, we really can make life better.
Learn more: .org

03/24/2026

Exercise can be the highlight of your day – making you feel stronger, healthier and proud! But if you’re living with Refsum disease, it’s important to know which foods make exercise easier and which ones to avoid. That way you know you’re doing the best for your body.
Along with the Refsum Diet Guide, the Global DARE Foundation offers, Exercise and Adult Refsum, a short video created by experts that can answer your questions about: exercising with neuropathy, balance issues, and food guidelines that will help you do your best!
Check it out, and enjoy the day! And visit our website to see all the tools available to help you manage your health with Refsum .defeatadultrefsumeverywhere.org

Address

443 Western Avenue #1054
South Portland, ME
04106

Website

http://defeatadultrefsumeverywhere.org/

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