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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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!
Share your storyThousands 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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28 February 2022 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Hayley was surprised to learn her son had GA1 deficiency, as she had never heard of it despite her other 5 children receiving the newborn screening test.
Read Hayley's story here: https://cutt.ly/vJ6OYwX
Share your own: https://cutt.ly/EPlcuja
For Alison, what was supposed to be a routine cleaning at the dentist led to being diagnosed with two chronic diseases.
Read Alison's story here: https://cutt.ly/gJ84TwN
Share your own: https://cutt.ly/EPlcuja
Jerguš's parents found out about their son's condition during pregnancy.
His parents hope to move to Slovakia one day to access better treatment.
Read Jerguš's story here: https://cutt.ly/mKhajt2
Share your own: https://cutt.ly/EPlcuja
#ECRD is one week away 📢
There is also plenty of opportunity for learning about the future of treatment and social policy for rare diseases- so register TODAY 👇
https://www.rare-diseases.eu/register/
Anna was diagnosed with Addison’s Disease, also known as Primary Adrenal Insufficiency, at a very young age. However later in life, she was diagnosed with Pituitary Cancer.
Read Anna's story here: https://cutt.ly/1JXiRYY
Share your own: https://cutt.ly/EPlcuja