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Rare Disease Day
28 February 2021 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 Aug 11
The Black Pearl Awards are held every year to mark the occasion of , to recognise the stars of the rare disease community⭐! Nominations are welcome from anywhere in the world - make yours NOW 👇👇
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Rare Disease Day Aug 4
‘My lamp will burn brighter everyday to inspire the world around me that even the darkest night will end and the sun will rise.’ Read Vidisha’s story about living with >> Tell your own story >>
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Rare Disease Day Jul 20
‘I know that Dermatomyositis has tested me and still does, and always will do, but it’s made me achieve things I am not sure I ever would have done…’ Read Zoe’s story about living with >> Tell your own story >>
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Rare Disease Day Jul 16
Rare Disease Day is being taken to the next level! Thanks to a grant announced today, we will amplify the rare disease voice even further. This & a 2nd grant awarded to make up $1.3m to support global rare disease community
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Rare Disease Day Jul 10
‘We enjoy every minute we are together, every smile and every progress of Matei. For us, every moment with him is priceless!’ Read Matei’s story about living with >> Tell your own story >>
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Rare Disease Day Jun 30
Isabella's diagnosis inspired her to 'never give up, raise awareness on "invisible" diseases and live [her] life to the fullest.’ Read Isabella’s story about living with >> Tell your own story >>
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Rare Disease Day Jun 29
We're hiring! The global awareness campaign is looking for a Campaign & Digital Communications Senior Manager to coordinate the development of the marketing and digital plans for Location: Paris Applications are open until 10 July
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Rare Disease Day Jun 19
‘As a healthcare professional, I bring a unique perspective to my interactions with patients.’ Read Cortney’s story about living with >> Tell your own story >>
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Rare Disease Day Jun 9
‘Despite being very, very small for her age, she is strong and determined... we are so thankful to see her progress no matter what that looks like.’ Read Zoey’s story about living with >> Tell your own story >>
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Rare Disease Day May 29
‘I now treat myself better, with more kindness and patience, instead of putting myself down for the things I can not do or change.’ Read Abby’s story about living with >> Tell your own story >>
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Rare Disease Day May 20
'The sweetest, carefree and happy little boy I know [...] he has taught me to slow down and enjoy and appreciate the small things in life.’ Read Hugo’s story about living with >> Tell your own story >>
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Rare Disease Day May 19
Art events are powerful tools to raise awareness for people living with a rare disease. Read our latest article to find out some of the innovative and inspiring awareness-raising events held for 2020.
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Rare Disease Day May 12
‘Even though trigeminal neuralgia is one of the worse things I have experienced [...] I wouldn’t want to change it.’ Read Crystal’s story about living with >> Tell your own story >>
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Rare Disease Day Apr 29
‘I had no idea that my life was about to change forever.’ Read Lisa’s story about living with >> Tell your own story >>
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Rare Disease Day Apr 29
EURORDIS is recruiting for a Communications Junior Manager to work on the exciting campaign. Post based in Paris - spread the word!
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Rare Disease Day Apr 23
- who are you thankful for during the pandemic?
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Rare Disease Day Apr 21
Register now: the European Conference on Rare Diseases & Orphan Products is now taking place uniquely online 14-15 May! Join the worldwide rare disease community incl. researchers, industry representatives, policy makers & patient advocates at
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Rare Disease Day Apr 20
‘Ava is 3 months old now and so far she is living a healthy and normal life. [...] We are hopeful for the future.’ Read Ava’s story about living with >> Tell your own story >>
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Rare Disease Day Apr 15
‘Jason has been an inspiration to many with a heart of gold and positive outlook on life despite his challenges.’ Read Jason’s story about living with >> Tell your own story >>
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Rare Disease Day Apr 9
Read the story behind the building and monuments lit up for 2020 around the world. Each individual effort to raise awareness locally sends a message of solidarity, breaking isolation globally!
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