28 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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Reaprendendo a viver com Pompe

Sou Magda, 56 anos e tenho Doença de Pompe, uma doença rara, genética e hereditária que causa fraqueza muscular e dificuldade respiratória e apesar de… Continue reading Reaprendendo a viver com Pompe

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Facciolita and Primary Lymphedema

My Name is Nicole (or facciolita as my social media persona), and I was born with a rare genetic disorder called WILD syndrome that causes… Continue reading Facciolita and Primary Lymphedema

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Bringing awareness to #rarediseaseday, here is my son’s storytelling…

My name is Baptiste; I am 2 years old. I can already speak very well for my age, I am interested in many things including… Continue reading Bringing awareness to #rarediseaseday, here is my son’s storytelling…

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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

On February 8 at 2PM (CET) the Rare Disease Day team is hosting a webinar on “Driving Awareness by amplifying young voices in the rare… Continue reading Learn to engage your young community

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

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