Date: 02/01/2024

In an unprecedented effort, we invited individuals from around the world to share their stories in their own words and settings. With over 80 submissions from across the globe – spanning from Argentina to Italy, Bahrain to India – we’ve crafted a video that genuinely embodies the diverse experiences of the rare disease community.

Each participant, regardless of their nationality, age, gender, or type of disease – including rare cancers and undiagnosed conditions – had the opportunity to share their story. The challenge of selecting from these powerful submissions was immense, yet the outcome is a video that goes beyond telling stories – it amplifies them.

Available in more than 60 languages, this video stands as a testament to our diverse, global community.

Watch it now, and be sure to share the video on your social media using the hashtag #RareDiseaseDay.

Share Your Colours

This Rare Disease Day, be a champion of our global movement:

• Organise or Join Events: Whether it’s planning a local event or joining an existing one in your community or country, your involvement is key. Add your event to our global map and connect with others in the rare disease community.

• #LightUpforRare: Illuminate your surroundings by lighting up your home, office, or a local monument, to show your solidarity with everyone living with a rare disease, wherever you are.

• Share Your Story: If you live with a rare disease, share your journey. Read others’ stories and get inspired. Understand the various individual and common challenges of life with a rare disease, and gain insight into the resilience and strength within this community.

• Use Our Graphic Materials: Download social media cards, profile frames, Instagram filters, infographics, and our campaign poster. Spread awareness and show your support in creative and engaging ways.

• Explore Our Equity Toolkit: Understand why equity is our campaign’s main call to action. This toolkit is designed to educate and inspire action towards fair opportunities for all, based on individual needs and aspirations.

• Educate: Use our school toolkits to explain the realities of living with a rare disease to children and teenagers, fostering empathy and understanding from a young age.

Your participation makes a difference. By organising, illuminating, sharing, and educating – or simply put, by sharing your colours – you help build a stronger, more united community. Let’s make these 100 days a memorable journey for the 300 million strong!

Visit RareDiseaseDay.org for all of the information and download materials.