#SWAN_UK - Twitter Hashtag

Paul L Arvidson | Is Editing Cady Grey 2! @realarvo

about 5 years ago

Following on from todays early start, I've now done a 3hour appointment at the beautiful #NHS Where experts who are all amazing pondered my #RareDisease daughter #SWAN_UK #CHSW

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Katie Finch @DrKatieFinch

over 6 years ago

Six common myths of genetic disorders, thanks @JeansforGenes #RareRevolutionM #CareAboutRare #Unique_Charity #SWAN_UK #M4RareDiseases #RareAdvocates #RareConnect #RareShareOrg #NHSgms #SpecialNeedsParenting https://t.co/1ei90PU2B2

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Katie Finch @DrKatieFinch

over 6 years ago

This is where amazing charities such as @Unique_Charity come in. Medics should engage with and embrace the patient-professional gap such organisations help to bridge. #RareDiseaseDay #RareRevolutionM #CareAboutRare #SWAN_UK #M4RareDiseases #RareAdvocates #RareConnect #NHSgms

The Festival of Genomics & Biodata

@FoGenomics

over 6 years ago

"Patients MUST be at the centre of everything we do, we cannot have desperate parents trawling facebook looking for researchers who might know something about their childs rare disease" Baroness Nicola Blackwood at #fog2020 #genomicsfest #genomics

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Great Paxton School @GtPaxtonSchool

about 7 years ago

Thank you to everyone for supporting the fundraising for #SWAN_UK we raised £233.29 An amazing amount. Well done to the children for organising and their parents for making the slime and thanks for all the donations.

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SWAN UK (syndromes without a name) @SWAN_UK

almost 8 years ago

Thanks for having me and sorry I was late! If you want to find out more about #SWAN_UK visit https://t.co/YT96NcHcnQ SWAN UK is a lifeline to so many. I'm so glad I found it. Night xx *LR

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SWAN UK (syndromes without a name) @SWAN_UK

about 8 years ago

Am looking forward to connecting this month with so many our awesome charities in Norfolk, and also all the amazing health professionals who work with our children. #NORFOLKREP #SWAN_UK #excited

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SWAN UK (syndromes without a name) @SWAN_UK

over 8 years ago

And as for social isolation. Wow. Someone today (can't remember who now!) mentioned this already. If there's only a handful of you, how do you find a support group who get you? Well, that's what #SWAN_UK do. Among many other things.

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SWAN UK (syndromes without a name) @SWAN_UK

over 8 years ago

I'm Dad to Nenna who has a rare disease. I'm the first Dad's Rep on #SWAN_uk and I'm a writer at https://t.co/UJ6oUZWdAe

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Rare Disease UK @rarediseaseuk

over 8 years ago

#raredisease #ORC Come along this Saturday and hear speakers from #geneticalliance #eurordis. Learn what you can do to influence healthcare for people with rare conditions and find out about some of the excellent support services available #CHAS, #@ALLIANCEScot, #SWAN_UK