Join the Countdown: Rare Disease Day 2024 Starts Now

With 100 days to go, the countdown to Rare Disease Day 2024 begins today. This isn’t just a date on the calendar; it’s the start of a global movement, a collective voice championing the cause of the 300 million people living with rare diseases. It’s our moment to step into the light, to share our stories, and to make our voices heard.

The Rare Disease Day 2024 Video: Voices from Around the World

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!