Ready and Raring for Rare Disease Day 2026

At Channeling Hope, we are gearing up to celebrate Rare Disease Day 2026. Rare Disease Day is a globally coordinated movement dedicated to people living with rare diseases to advocate for equity in social opportunities, healthcare, and access to diagnosis and therapies. Building an international rare disease community is part of our mission, and on February 28th, we celebrate NALCN champions and all Rare Disease advocates in raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families, and caregivers.

Click the NORD Rare Disease Day button below to find resources on how to:

• "Show Your Stripes" (Zebras are the official mascot for rare diseases)
• Brighten your day with the "Faces of Rare" to learn about the extraordinary lives of rare disease warriors
• Join the international campaign to "Light Up For Rare" and share rare disease colors to start conversations
• Find Rare Disease Day events near you and share events you have planned
• Learn how to take action for Rare Disease advocacy

Click the EveryLife Foundation Rare Disease Week button below to register for these free events dedicated to advocating for policies to advance innovation in rare disease care and research:

• Virtual: FDA Rare Disease Day Public Meeting, February 23
• In DC: Rare Disease Week on Capitol Hill, February 24-26
• Virtual & In Person: Rare Disease Day at NIH, February 27

Want to celebrate Rare Disease Day with your child and their schoolmates? Check out these Rare Disease Day coloring pages and infographics. Or reach out to Emily (emily@channelinghope.org) for help creating a flyer specific to your family (see Kam's example below). Other resources for inspiring classmates can be found here.

We’ve already begun raising hope and awareness for NALCN-related diseases. At the 2nd NALCN Channel & Related Disease International Conference in October 2025, we launched the Raising Hope Capital Campaign to raise $2.8 million by 2028 to move an effective treatment through clinical trials and safely to our community. This Rare Disease Month, we're seeking more CHF Champions to start fundraisers and spread the word to amplify CHF's mission to advance care and develop treatments for individuals affected by NALCN Channel-related diseases. Download this flyer to share at work and in school.

From New Hampshire to Texas, we have a great line-up of fundraisers to kick off Rare Disease Month and invite you to start your own! Contact Diana (Dduggan@channelinghope.org) for assistance in creating your own local or virtual fundraiser, and Emily (emily@channelinghope.org) for assistance in creating personalized flyers.

We're celebrating Rare Diseases like CLIFHADD, UNC-79 Disorder, IHPRF1, and IHPRF2 throughout February. Check out Group Raise to easily create fundraisers in your local community. If you need information on Channeling Hope, including non-profit status documentation, contact Diana (Dduggan@channelinghope.org). Together, let's make a real impact this Rare Disease Month!