28 Februarywas 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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147
days
to go

300M

people with rare diseases

600+

events worldwide

106

countries involved

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

Read our stories

A happy story with Crigler Najjar type 1

I was born in Portugal with a rare genetic disorder called Crigler Najjar Syndrome (CNS) type 1, a serious condition affecting the liver. CNS is… Continue reading A happy story with Crigler Najjar type 1

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Plus d’humanité et empathie pour les patients en Cote d’ivoire

Salut tout le monde! Je suis Rose originaire de la Cote d’ivoire. J’ai été diagnostiquée de la myopathie GNE en 2017. C’est une maladie neuromusculaire… Continue reading Plus d’humanité et empathie pour les patients en Cote d’ivoire

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Looking through both sides of the incubator window

On May 17th ( Also the day of NEC awareness!) 1999 I was born a healthy term+6 baby however I developed NEC soon after birth.… Continue reading Looking through both sides of the incubator window

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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

In the run up to Rare Disease Day 2022, we gathered a team of expert speakers from all around the world to tackle an important… Continue reading How to speak to young children about rare diseases

Today, 28 February 2022, is Rare Disease Day; the day dedicated to raising awareness for the 300 million people living with a rare disease around… Continue reading Press Release: Share Your Colours for Rare Disease Day

On 28 February 2022, the rare disease community is coming together for Rare Disease Day to spread hope and solidarity across the world with a… Continue reading Join the Global Chain of Lights!

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