Clare Stacey

Patient advocate: driven by necessity, and the desire to improve health outcomes for patients living with Vascular Ehlers-Danlos Syndrome
All opinions my own

[Addenbrooke's Charity @ACTcharity]

Today is #RareDiseaseDay2024! 1 in 17 people will have a rare disease in their lifetime.

Thanks to your donations, the Outpatient Experience Group & staff from the @East_Genomics team visited @CUH_NHS to raise awareness of rare diseases with staff, patients the community. 💙

[Clare Stacey @LovenBeekind]

Great day @CUH_NHS raising awareness for #RareDiseaseDay . Huge thanks to the amazing CUH staff and volunteers for all their hard work & support!! @East_Genomics
@M4RareDiseases

[Annabelles Challenge Vascular EDS Charity @AJsChallenge]

Thank you to Gemma Hasnaoui who is our South West regional coordinator for presenting Vascular EDS to trainee GP colleagues in Bournemouth and staff training at Poole A&E & Bournemouth A&E.

Happy Rare Disease Day!

#rarediseaseday #vasculareds

[Annabelles Challenge Vascular EDS Charity @AJsChallenge]

We have launched VEDS Emergency Information packs & we are pleased 182 have been ordered so far to support #VascularEDS patients in an emergency.

The emergency packs are free to UK members thanks to #NationalLottery funding through our #VEDS Support Programme. #RareDisease

[Cambridge University Hospitals NHS @CUH_NHS]

Today we are celebrating International Day of Radiology, which touches many of our patients' lives, even if they do not meet the Radiology team in person themselves.

Read more about our brilliant Radiology staff here: https://t.co/qljr9pFSUT

#CUHProud #Excellent #IDOR2023

[Munya Chawawa @munyachawawa]

Day in the Life with Suella Braverman ✌🏽👅 #SuellaBraverman

[Clare Stacey @LovenBeekind]

@lornahamblin3 Thank you Lorna!! Hope you are keeping well! Xxx

[Clare Stacey @LovenBeekind]

I contacted the vascular teams at Addenbrooke's Hospital to share news of our wedding (significance explained in letter). I received a lovely letter from one of the vascular surgeons this morning! Such an amazing team. So fortunate to benefit from their support and expertise ❤

[Cambridge University Hospitals NHS @CUH_NHS]

Become a CUH member and you’ll have access to exclusive events, discounts, updates and opportunities to get involved in shaping the future of our hospitals.

Join us for free: https://t.co/FoH473lvdn.

#membership
#CUHproud

[Clare Stacey @LovenBeekind]

Brilliant letter from Joe 🤣

[Joe Lycett @joelycett]

FAO @SuellaBraverman

[Clare Stacey @LovenBeekind]

@joelycett @SuellaBraverman Just brilliant Joe 🤣🤣🤣

[Clare Stacey @LovenBeekind]

@suzannemagee12 @silverpebble Love it!!! ❤ xxx

[Clare Stacey @LovenBeekind]

@GBNEWS Shame Philip Schofield didn't get the same support. You would have thought he had murdered someone the way he was treated

[MedicsforRareDisease @MedicsForRare]

Lesson 2, ‘The Rare Disease Journey’ from the 'Mental Health and Rare Disease' course is now live! Discover more about how rare diseases can affect #mentalhealth by logging on to M4RD Learn now! made in collaboration with @RareMindsUK.
https://t.co/fy6JlKBbbX

[Clare Stacey @LovenBeekind]

Thank you NHS!!! ❤

[MedicsforRareDisease @MedicsForRare]

We are so happy to bring you the first lesson of our BRAND NEW online course which explores 'Mental Health and Rare Disease’! 🦓 Made in collaboration with the amazing @RaremindsUK - lessons will be going live weekly, starting today. Begin now! https://t.co/fy6JlKBbbX

[Cambridge University Hospitals NHS @CUH_NHS]

Tonight at 7pm 👇👇

[Annabelles Challenge Vascular EDS Charity @AJsChallenge]

VEDS in the news today. Claire Hall has recently experienced a vEDS episode and despite being hospitalised is now raising awareness and funds through her art exhibition.

[Cambridge University Hospitals NHS @CUH_NHS]

We're so pleased that Roland Sinker, chief executive, has been awarded a CBE for services to healthcare in His Majesty The King’s Birthday Honours.
Read more at https://t.co/ikuppReIi5

[Bonnie Jackson: MumOnAMission @BonnieVEDSmum]

Mia’s Pawfect Dog Day on ITV News London!
Mia raised an incredible £1,500 for #AJschallenge
Fighting the invisible together!