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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239
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

Rui’s CDA1 Story

Rui was born on 20th of February 2022 with severe jaundice, enlarged spleen and enlarged liver. We spent 20 days on the special care baby… Continue reading Rui’s CDA1 Story

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Avery’s Fight With NKH

Avery has Glycine encephalopathy (GCE) or nonketotic hyperglycinemia is an inborn error of glycine metabolism, inherited in an autosomal recessive manner due to a defect… Continue reading Avery’s Fight With NKH

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Hereditary colon cancer live-case presentation

My name is Dan, retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year hereditary colon cancer WARRIOR w/a permanent ileostomy.… Continue reading Hereditary colon cancer live-case presentation

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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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