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Addison's Disease Feb 29
Did you know the ADSHG is here for people with Adrenal Insufficiency? Many people like Beverley are sharing posts today to mark and talk about their .
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Ivy Kitten 😽 on xxx 0nlyFam Feb 29
I’m supporting by sharing my rare disease experience, to offer comfort and hope to other patients and their families. Read my story and become a star for
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Genetic Alliance UK Jul 30
Last chance to complete our survey! Make sure your community's voice is heard - complete and share now: .
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Cystic Fibrosis Trust Feb 24
Have any questions? is doing a Twitter Takeover on from 17:00 – 18:00 make sure to use to send your questions!
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CGD Society Feb 29
To mark myself and Simon who has CGD were asked to speak about life with and our charity. Thank you for having us. You were all so welcoming
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Addison's Disease Feb 26
⭐️ Rare Disease Day is coming up and people with many different conditions will shine like stars on Saturday! Create a unique star in the rare reality 'sky' on the Rare Disease UK website today: . ⭐️
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Ehlers-Danlos Support UK Jul 27
Every five years Genetic Alliance UK (the charity that runs Rare Disease UK) monitors how things have changed for people affected by rare conditions in the UK - the time is running out to have your say.
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Anna Mitchell Feb 29
A4 - this is a challenge for doctors as well as patients and their carers. It’s really helpful to have an amazing GP in this case who has oversight of all the medical issues
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DFPCUK Feb 27
Sam will be attending our very first patient conference on March 7th. We’re very excited to be able to bring our community together for this event. For the majority this will be the first time meeting another DF patient in person.
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Linda MacMillan Nov 5
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Rare Disease UK Jul 28
Time is running out to share your experiences - complete the survey now: .
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ABPI Feb 25
Pleased to be celebrating in Wales with
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Disabled Children's Partnership Aug 7
New report on lockdown for families living with a rare condition.
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Len Richards Feb 24
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CavernomaAllianceUK Feb 25
Can you spot some of our stars in the night sky? Thanks to you can now become a star in the and help raise awareness for and Join the campaign and get involved for
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Contact Aug 6
Approximately 3.5 million people in the UK have a rare condition. Is your child one of them? We want to hear about your experiences during lockdown. Please tweet us using 👇
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ChildhoodTumourTrust Feb 29
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AKU Society Jul 2
Essential reading this week, especially as the UK begins to creep out of lock down.The of
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Sophie Dodgeon Aug 13
Late to this, but what an excellent report from setting out the impact of on people and families affected by Much of this will be familiar to families supported by
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Global Shakers Feb 29
Our list of Rare Disease Champions is packed full of Patient Power 🦓💪 On learn more about these incredible people and their fight to raise awareness of some of the world's most underserved diseases.
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