Rare Disease Day 2025

Rare Disease Day 2025 will take place on 28 February, bringing together people from more than 100 countries to raise awareness for the 300 million individuals worldwide living with rare diseases. This annual event highlights the importance of equity in healthcare, access to treatments, and improved medical research for those affected by rare conditions.

What is Rare Disease Day?

Launched in 2008 by EURORDIS (Rare Diseases Europe) and its Council of National Alliances, Rare Disease Day takes place every year on the last day of February. Its mission is to shine a spotlight on rare diseases, which affect 1 in 20 people globally, while fostering solidarity and advocating for better representation, support, and care for patients, families, and carers.

Why is Rare Disease Day important?

For those living with rare diseases, awareness is a powerful tool. Rare Disease Day 2025 seeks to:

• Highlight the struggles of those affected by rare conditions.
• Advocate for equitable access to diagnosis, treatment, and care.
• Bring together healthcare professionals, researchers, policymakers, and patient organisations to drive positive change.

With over 100 countries participating, Rare Disease Day continues to grow as a global movement, encouraging collaboration, support, and action for rare diseases.

How to get involved in Rare Disease Day 2025

1. Participate in #LightUpForRare:
A central part of Rare Disease Day 2025 is the #LightUpForRare campaign. People worldwide are encouraged to light up their homes, local landmarks, and community spaces in vibrant colours to create a visible show of solidarity and support.

Join the global chain of lights by illuminating landmarks, homes, or buildings in the Rare Disease Day colours. At 7 PM local time on 28 February 2025, light up your surroundings to show solidarity and raise visibility for rare diseases.

2. Share your colours:
Spread the message on social media by sharing photos, videos, and stories about your experiences. Use the hashtags #RareDiseaseDay and #LightUpForRare to connect with a global audience and inspire change.

3. Organise or Attend Local Events:
Find registered Rare Disease Day events in your area or host one to raise awareness. From walks and fundraisers to educational webinars, every activity makes a difference.

4. Share your story:
Your voice matters. Whether you are a patient, caregiver, or supporter, sharing your personal experience helps build understanding and resilience within the rare disease community.

5. Access awareness resources:
Download free resources, including social media graphics, posters, and informative toolkits to support your awareness efforts.

To get involved, visit the official Rare Disease Day 2025 website here.