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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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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IL PICCOLO GRANDE GUERRIERO SIMONE
Mi chiamo Simone e sono nato il 22 febbraio 2014 a in provincia di Torino. La mia nascita è stata una grande gioia per mamma… Continue reading IL PICCOLO GRANDE GUERRIERO SIMONE
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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
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Every year, thousands of events are
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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
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
Here at #RareDiseaseDay, we are giving our social media a bit of a✨ makeover✨ and we are going to start posting reels to reach more of the rare disease community! So we wanted to ask you, our lovely followers, what you would like to see from us?- REPLY BELOW👇
Rylae-Ann was born in North America with a rare neurotransmitter disorder known as AADC Deficiency.
However today, she can read 📚, speak 🗣️, run 🏃♀️, swim 🏊♀️, and even ride a horse 🐎.
Read Rylae-Ann's story here: https://cutt.ly/wJXqGFD
Share your own: https://cutt.ly/EPlcuja