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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 Apr 19
‘Life with EDS isn’t easy. Every day it’s a goal to find daily joy. I have to believe it will get better, and I know it will in some capacity.’ Read Megan’s story about living with syndrome >> Tell your own story >>
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AACC Live Apr 15
The International Empreinte : BRONZE pour la campagne « , Show Your Care » de et !
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Rare Disease Day Apr 18
Take a look at a 2019 event in India. Over 200 people, including patients, families and doctors took part in a press conference. The event was covered by media in three languages, Telugu, Urdu and English. .rarediseaseday.org/event/india/3337
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Rare Disease Day Apr 12
‘I have learned to embrace my disability and use my limited energy into making a difference. I never think ‘Why me?’, instead I think ‘Why not me?!’’ Read Mona’s story about living with # GNEmyopathy >> Tell your own story >>
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Rare Disease Day Apr 11
Síndrome De Rett Guatemala brought together supporters, families and rare disease patients to march through the capital city for 2019. The march was held to bring visibility and raise awareness of rare diseases in Guatemala!
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Rare Disease Day Apr 5
‘I have a rare disease that suddenly changed my life. I went to bed whole but woke up a changed mother and wife.’ Read Liz’s story about living with >> Tell your own story >>
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Rare Disease Day Apr 3
Check out the 2019 event by in the Ivory Coast that brought together rare disease patients, families and medical professionals. The event was reported on national TV & raised awareness of in the community!
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Rare Disease Day Mar 29
‘Sure, a diagnosis would give us answers about the future and help us ‘treat’ whatever disorder she has. But at the same time, there are no data or statistics putting limits on what Leila might achieve; the sky is the limit for her.’ Read Leila’s story >>
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Rare Disease Day Mar 27
Discover the highlights of the event organised by Pro Rare Austria including a message of solidarity shared by the Minister of Health & fun with face-paints!
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Rare Disease Day Mar 25
'Research indicates there are approximately 40 cases of 10p deletion syndrome and I have continued hopes to come in contact with a family someday.’ Read David’s story of living with 10p deletion syndrome >>
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Rare Disease Day Mar 21
2019 was nearly a month ago! What was your highlight from this year’s campaign? Read about the success of Rare Disease Day 2019
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Rare Diseases Europe Mar 7
Survey now live! Is there a treatment available for your rare disease? Are you able to access it? Has the treatment resulted in a positive or negative experience for you? Take our new survey, available in 23 languages.
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Rare Disease Day Mar 7
Did you take part in an event for 2019? Share your photos with the international rare disease community and upload them to the website
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lucyimber Feb 26
Staff from showing their support for with some enthusiastic jazz hands
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Rare Disease Day Mar 1
An enormous thank you to everyone who took part in 2019! Thousands of events were held in a record 100 countries! All your actions immensely supported the rare disease community around the world.
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Rare Disease Day Mar 1
The Empire State building in New York was lit up in the colours of – sending a powerful message of solidarity to the worldwide rare disease community! Thank you to our friends at for sharing!
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Rare Disease Day Feb 28
. Director-General of the World Health Organization supporting the global community on 2019!
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Rare Disease Day Feb 28
2019 is today! What action are you taking to raise awareness of rare diseases today? Join the global movement for rare diseases.
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Rare Disease Day retweeted
FILFOIE Feb 28
Le collectif Les pieds sur Terre interprète en direct de Gare du Nord sa chanson « Un autre regard », bien entouré par un public curieux et nos tee-shirts roses sur l'espace des filières de santé Maladies Rares.
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Françoise Grossetête Feb 28
C’est aujourd’hui la journée des maladies rares L’Europe s’engage aux côtés des malades, notamment pour encourager la recherche et faciliter l’accès aux traitements. Nous ne lâchons rien !
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