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WHY DON'T YOU TELL US YOUR STORY?
Share your photos, videos and your experiences! Be part of Rare Disease Day by informing others and raising awareness—sending a message of solidarity and community.

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Bridget - United States
My name is Bridget Hunnewell, and I have a rare bleeding disorder called Afibrinogenemia. I was diagnosed when I was just 1 day old, due to the fact that my heel sticks didn't stop bleeding. A lot of people most likely have never heard of this disease, and when I was younger, I often times was too "embarrassed" to discuss it with anyone other than close family. I was afraid of what others may thin...
Tammy - United Kingdom
Hi everyone!My name is tammy I'm in my early 30s and have a rare condition called eosinophilic gastroenteritis. Whilst people may age and back in my teens it's been hard to admit that I'm not like anyone else.The condition takes all the things away that you once took for granted away from you.we are going through tests and procedures because to of my family members have this too. The professional ...
Andy - United Kingdom
My time associated to NETS The below story is my eleven years in full. This should hopefully explain the highs and lows during my time with NETS and the value of PRRT TREATMENT. Hello, Ladies and Gentlemen, very pleased to be here so I can tell my story and hopefully help with my information? My name is Andy Norris. Please, if you can bear with me as I cannot explain eleven years quickly but w...
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