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Rare Disease Day
28 February 2019 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases.
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Rare Disease Day 5h
What action will you take for 2019? Check out this handy guide for patient organisations for 7 ways to get involved
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Rare Disease Day Nov 14
Sneak peek from first filming of the official 2019 videos live from Zagreb, Croatia. Big thanks to , Karlo and his sister Ida!
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Rare Disease Day Nov 8
‘I have always lived and played soccer to feel normal and not to be ashamed, while I was trying in any way I could to hide my feet even to my teammates…' Read about Matteo’s story living with EEC syndrome >>
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Rare Disease Day Nov 5
The theme of 2019 is: ‘Bridging health and social care’. Find out more by reading the full announcement!
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Rare Disease Day Nov 1
‘Finally they placed an NJ tube and it was the first time she was ever happy’ Read about Cecilia’s story living with 1q21.1 microdeletion syndrome >> Tell your own story >
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Rare Disease Day Oct 30
Join a webinar to learn how to boost your awareness day campaign using digital tools! The webinar takes place tomorrow, 31 October at 1pm CET through Facebook Live.
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Rare Disease Day Oct 29
Looking for ways your organisation can get involved in Rare Disease Day 2019? Become a friend of Rare Disease Day today to show your support!
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Rare Disease Day Oct 25
‘I determined he probably had HSP SPG 11 - by the time we saw the neurologist, I knew more about the condition than he did...’ Read about Charlie’s story living with complex hereditary spastic paraplegia >>
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Rare Disease Day Oct 22
It’s never too early to start thinking about your events for Rare Disease Day 2019! Visit for guidance and start planning!
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Rare Disease Day Oct 19
"Summer is a 29-year-old from Alabama who originally began to have a decline in health following a tick bite several years ago." Read about Summer’s journey living with rare diseases following a tick bite >>
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Rare Disease Day Oct 17
Have you planned your 2019 activities yet? Take a look at the information pack for 7 ways to get involved!
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Rare Disease Day Oct 15
"Just about a year or so ago, I came across a Facebook page – Living with IA – that liberated me from the psychological prison I was in all my life.” Tino writes about his journey living with imperforate anus in Zimbabwe >>
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Rare Disease Day Oct 11
News! The theme for Rare Disease Day 2019 is ‘Bridging health and social care’. Be part of a global movement calling for the coordination of all aspects of care! Read more: Get involved in 2019
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Rare Disease Day Sep 26
"The first words out of the gastroenterologist’s mouth were, “I don’t know how you knew you had this, but you have eosinophilic esophagitis.”" Read Sarah's story of being diagnosed her resilience in managing her dietary restrictions >>
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Rare Disease Day Sep 24
New! The information pack on how to get involved with Rare Disease Day 2019 is now available to download. Don't delay, start planning your Rare Disease Day activities today!
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Rare Disease Day Sep 14
"As we walked out at the end of the day our nurse said to us "you can teach him all you know, but in the end he will be teaching you". Samantha talks about her son, born with 9q34 duplication syndrome and 10q24 deletion syndrome >>
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Rare Disease Day Aug 29
"I've been on different treatments, diets, lifestyles but nothing has seemed to make my illness a bit easier except for one thing: staying positive." Sasha writes about her difficulties getting diagnosed with essential thrombocythemia and myelofibrosis >>
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Rare Disease Day Aug 27
Nominate a rare disease star for a Award by 7 September. The will mark the occasion of Rare Disease Day 2019 by recognising those who go above and beyond for the rare disease cause.
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Rare Disease Day Aug 17
is for everyone, wherever you are on your rare disease journey! Samantha talks about getting a diagnosis and support for her son Lewis, who is living with Batten disease
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Rare Disease Day Aug 15
"I found out that I had a tumour in the back of my eye by getting hit on the forehead with a cookie sheet" Hope tells her story of staying positive and healthy after being diagnosed with ocular melanoma >> . Tell your own story >> .
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