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:

  • #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.
  • 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 for all of the information and download materials.

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