29 Februaryis Rare Disease Day

Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.

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people with rare diseases


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Join the community. Help us build awareness. Share your photos, videos and experiences!

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1 heure à la fois

À l’occasion de la Journée des Maladies Rares, je souhaite partager avec vous mon parcours avec le Syndrome de Schmidt. Depuis septembre 2021, je vis… Continue reading 1 heure à la fois

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Katie’s Story

My name is Katie and I was diagnosed with CMTC when I was 5 months old. I am now 30 years old and have lived… Continue reading Katie’s Story

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Annarita e la sua passione per la danza oltre la disabilità

Mi chiamo Annarita ho 27 anni e sono residente a Pagani, un paese in provincia di Salerno. Il destino ha voluto che proprio il giorno… Continue reading Annarita e la sua passione per la danza oltre la disabilità

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What's your story?

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!

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Thousands of events
in over 100countries

Every year, thousands of events are
organised across the world.

In the news

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… Continue reading Join the Countdown: Rare Disease Day 2024 Starts Now

In the run up to Rare Disease Day 2023 on 31 January at 5.30 CET, we hosted a webinar with guest speakers and medical experts… Continue reading Webinar: How to Raise Awareness Among Healthcare Providers

Today is Rare Disease Day! We are inviting everyone to share their colours and raise awareness for the 300 million people living with a rare… Continue reading Press Release: Mark Rare Disease Day 2023

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