Every year on February 28 (or February 29 in leap years—the rarest day of all), the world comes together to raise awareness and drive change for the 300 million people worldwide living with a rare disease. Rare Disease Day is a globally coordinated movement dedicated to advocating for equity in healthcare, diagnosis, and treatment for individuals affected by rare diseases, as well as their families and caregivers.
Since its inception in 2008, Rare Disease Day has united a diverse, global community with a shared purpose: to improve lives through awareness, action, and support. Led by EURORDIS and more than 65 national patient organization partners, this movement has played a crucial role in advancing rare disease advocacy on local, national, and international levels.
Everyone can take part in making a difference
Whether you are a patient, caregiver, healthcare professional, researcher, policymaker, or simply someone who cares, your voice and actions matter.
You can contribute by:
Sharing your colors on social media to amplify awareness
Illuminating landmarks and homes in support of the cause
Sharing personal stories to highlight the challenges and triumphs of those living with a rare disease
Advocating for change by engaging with policymakers
Participating in events to show solidarity
Did you know that
Saguenay—Lac-Saint-Jean (SLSJ) region in Québec, Canada, is internationally recognized to have the highest prevalence of DM1 worldwide and has been very active on the research scene since the 80s?
The longest ongoing natural history study has originated there in 2002 and it is the home of the Groupe de recherche interdisciplinaire sur les maladies neuromusculaires (GRIMN). Every year, research teams and their collaborators come together to highlight the Rare Disease Day by sharing their discoveries during a scientific and clinical gathering with more than a 100 participants.
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