Celebrating Rare Disease Day: Unity, Awareness, and Hope

This year, on February 29, the world celebrates Rare Disease Day.

So what is Rare Disease Day? It’s a day that shines a light on the challenges faced by individuals with rare diseases, emphasizing the importance of research, support, and community.

Given that we are a rare disease organization – that’s something we feel very strongly about.

So – this year, we are proud to present a special video we created, to encapsulates the spirit of this significant day.

We hope that there are readers out there who will help share the message, and if especially generous – will help those affected through a small donation.

I want to help – what can I do?

If you have read this far, and you still want to donate something more than just a watch on the video – thank you.

Rare diseases are rare, but so too are rare disease donors.

Here are three remarkable organizations that stand at the forefront of this battle, tirelessly working to make a difference:


As a mighty voice for rare disease patients across Europe, EURORDIS is instrumental in advocating for patient-centric policies, driving research, and providing crucial support. They also run a fantastic Instagram account to help bring the lives of those with rare illnesses, a little closer to all of us. Their dedication to enhancing the lives of those affected by rare diseases is nothing short of inspirational. Support their mission:

RareDiseases.Org (NORD)

The National Organization for Rare Disorders is a lifeline, offering a unified network of resources, education, and advocacy. NORD’s commitment to advancing rare disease treatments and providing patient support systems sets a benchmark for excellence and hope. Join their cause:

Congenital Hyperinsulinism International (CHI)

As champions for those affected by congenital hyperinsulinism, this organization is at the heart of advocacy, research, and support. Their unwavering dedication to improving the lives of patients and families worldwide is a source of strength and encouragement. Contribute to their noble work today:

This Rare Disease Day, let’s stand together to champion the cause of rare diseases. Every story shared, every donation made, and every step taken brings us closer to a future where no rare disease patient feels alone.

Together, we are stronger. Together, we make a difference.