29 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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300M

people with rare diseases

600+

events worldwide

106

countries involved

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Diagnosis is not Destiny

My name is Celyna, and I am from Natal, Rio Grande do Norte, Brazil. I have been diagnosed with hereditary spastic paraparesis subtype SPG4. My… Continue reading Diagnosis is not Destiny

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Summarizing 7 years of rehabilitation, growth, and accomplishment,

At the age of 19, I embarked on my first formal role as an office manager in a law firm, only to find myself unable… Continue reading Summarizing 7 years of rehabilitation, growth, and accomplishment,

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Elle’s Story

My name is Elle, I am an Actress and International Makeup Artist. I was diagnosed with Postural Orthostatic Tachycardia Syndrome, Elhers Danlos type 3 and… Continue reading Elle’s Story

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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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