Rare Disease Day (RDD) is the annual international awareness day when the global rare disease community comes together to raise awareness and advocate for the  people living with a rare condition worldwide.

Why is Rare Disease Day so important? Because it’s an opportunity to remind the world that rare diseases are not so rare. Collectively, rare diseases affect 300 millions of individuals and families, and each one deserves attention, research, and support. Collaboration is key to amplifying the voices of small, individual rare disease charities. By working together, we can achieve greater impact and ensure that the needs of the rare disease community are heard.

RDD isn't just a single day though! It's a catalyst for ongoing action. The momentum generated by it fuels year-round efforts to improve diagnosis, access to treatments and care, and support for those living with rare conditions.

This year, RDD once again brings together patients, families, carers, healthcare professionals, researchers, policymakers, and advocates from around the world. Here are some of the coordinated efforts worldwide we know about and we participate in:

Rare Disease Day - www.rarediseaseday.org/

Genetic Alliance UK (geneticalliance.org.uk/event/rare-disease-day-2025/)

• Will be publishing ‘More than you can imagine: an anthology of rare experiences’. It will be online and will share a wide range of experiences from the genetic, rare and undiagnosed communities through creative works such as poetry, stories, photos and drawings. We submitted “Cataclysmic Limericks” by Alex irvine (read more in the article dedicated to it).
• RDD Receptions geneticalliance.org.uk/news/rddreceptions/
• Fundraising and activities in parliament.

Eurordis (www.eurordis.org)

• Special event at the European Parliament in Brussels entitled Impact of Rare Diseases: This aims to highlight the issue of rare diseases to EU policymakers and outline potential policy solutions at the start of the new political mandate.
• Eurordis and its network of national alliance patient organisation partners, provides a powerful focal point for rare disease advocacy at local, national, and international levels.

National Organization for Rare Disorders (NORD) 

• rarediseases.org/rare-is-everywhere-be-a-champion-to-the-rare-disease-community-this-feb-28/ - events, political campaigns and fundraising
• Living Rare Study: livingrarestudy.org
• Raising awareness at school, at work and in your community with their support
• Light up for rare - landmarks and buildings across the US will be illuminated in official RDD colours.

Don’t forget to follow us on social media around these events and share our efforts with your community. If you have any RDD stories of your own, please share them with us and we’ll publish them. Every voice counts.

We encourage everyone to get involved in Rare Disease Day 2025 and every year! Individually we may bring together only few voices as a charity for ultra-rare conditions, but together, we can make a difference!