Behçet's UK @BehcetsUK
Caring for all affected by this rare, complex and lifelong condition. Promoting research into the cause, effects, treatment and management of Behçet's. behcetsuk.org United Kingdom Joined November 2015-
Tweets1K
-
Followers986
-
Following482
-
Likes490
The Northern Ireland Support Group are meeting at 11am on Saturday 17 August 2024 at Strandfield Cafe, Dundalk, County Louth, Ireland. More info is on our website: behcetsuk.org/event/northern… If you have any queries, please contact Fionnuala at [email protected]
Can you help us reach our summer fundraising goals with your everyday online shopping?🌞 It only takes 2 minutes to join @giveasyoulive , so start raising FREE donations today! > giveasyoulive.com/join/behcetsuk… Thank you to everyone who is already signed up! 🙌 #Behcets
Thank you so much to Georgina who is doing a head shave this September in aid of Behçet's UK, in honour of her wife who has the condition ❤ Donate to Georgina's JustGiving page: justgiving.com/page/georgina-… Thank you to everyone who has donated 🙌 #Behcets
Is your child with #Behcets anxious about returning to school or college this September? Our guide for teachers, staff, parents and carers explains what the condition is, and how it might affect a child or young person whilst at school or college. behcetsuk.org/behcets-school…
Our summer newsletter recently went out to members by email and post 🍦🌻🌞 Newsletters are an exclusive benefit of Behçet's UK membership. To find out more and join today, go to behcetsuk.org/how-to-join/ #Behcets
📢 SUPPORT GROUP MEETING THIS EVENING 📢 Don't forget, volunteer Clare Gibson is hosting an online support group on Zoom this evening, Wednesday 17 July from 7.30pm-9pm for any #Behcets patients (diagnosed or awaiting diagnosis) in England. To join, email [email protected]
If you’d like more information about future support groups for those in Wales, or to be notified of the next meeting date when it is announced please email Rachael via [email protected]
Due to unforeseen circumstances the next support group meeting for those in Wales scheduled for Saturday 20 July 2024 has been postponed. We apologise for any disappointment. The next meeting will be arranged for September and the date will be confirmed at a later stage.
Did you know, when you sign up to @giveasyoulive the retailers you shop with will make a donation to us for every purchase you make? It's free, and the funds help us to continue our work in supporting those affected by #Behcets Sign up at giveasyoulive.com/join/behcetsuk Thank you! 🙌
RESCHEDULED! Volunteer Clare Gibson has had to reschedule next week’s online support group on Zoom. It will now be held on Wed 17 July 2024 from 7.30pm-9:00pm for any #Behcets patients living in England. If you are interested in joining, please email Clare via [email protected]
Thank you to everyone who joined us for our 2024 Friends & Family Day last Saturday @LlandegfeddLake in Monmouthshire, South Wales. We hope you all enjoyed it! 😊 Thank you so much to the staff @LlandegfeddLake for their help in making it a brilliant day 🙌
Have you considered becoming a member of Behçet's UK? Behçet's UK cares for all those affected by #Behcets in the UK including patients and their families and carers. Find out about membership and join today at behcetsuk.org/how-to-join/ #SmallCharityWeek
Behçet’s UK, formerly known as Behçet’s Syndrome Society was founded in 1983 by Judith (Judy) Buckle, a nurse & Behçet’s patient. Over the years we have evolved to become the UK’s primary charity caring for all those affected by #Behcets Find out more at behcetsuk.org/aboutus/
We’re supporting #SmallCharityWeek 🙌 Did you know that 96% of UK charities are small? We’re playing a big role in providing vital services to millions of people across the country.
We want the next government to review the prescription charge exemption list, so people with #Behcets in England don't pay for vital medication like the rest of the UK. We signed the letter to party leaders asking them to commit to reviewing the charge #ReviewTheCharge #GE24
For #GE2024 we want candidates to pledge to help to improve awareness of genetic, rare and undiagnosed conditions including for those living with #Behcets bit.ly/P4GRUCan Find out more at geneticalliance.org.uk/pledge4gru/ #Pledge4GRU @GeneticAll_UK
Your next MP can help improve the lives of people affected by neurological conditions, and conditions with neurological symptoms like #Behcets. Call on your local parliamentary candidates to #BackThe1in6 & become a #NeuroChampion in the next Parliament. bit.ly/NeuroChampion
📢 SUPPORT GROUP MEETING THIS SATURDAY 📢 Don't forget, trustee Rachael Humphreys is hosting a Zoom support group meeting for those affected by #Behcets in Wales this Saturday 15 June at 10am. To join, please email [email protected] by 12pm midday tomorrow (Fri 14 June).
Have you remembered Father’s Day is Sunday 16 June? If you think Dad would prefer an e-card and the cost of a paper card donated to Behçet's UK, then you can send yours at: dontsendmeacard.com/ecards/chariti… Thank you to everyone who uses @dontsendmeacard to raise funds for Behçet's UK!
Vasculitis - In memor... @vascuk
4K Followers 3K Following Vasculitis - A Rare Rheumatic Autoimmune Disease
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
EURORDIS-Rare Disease... @eurordis
31K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
vasculitides @vasculitides
5K Followers 2K Following Living with EGPA/Churg-Strauss Syndrome • NIH-funded researcher • vasculitis patient advocate - Also over on Bluesky... https://t.co/vY6bKKN0ZM
EATC for Children @EATC4Children
743 Followers 657 Following The Experimental Arthritis Treatment Centre for Children is a national research centre dedicated to testing better medicines for children with MSK conditions
BSR @RheumatologyUK
16K Followers 1K Following We're taking a short break from posting while we review our long-term presence on X. Stay connected via other socials or [email protected]
ERN ReCONNET 🇪🇺 @ern_reconnet
3K Followers 864 Following 🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
MedicsforRareDisease @MedicsForRare
5K Followers 2K Following This account is no longer active, please continue to follow our work on Instagram and Bluesky! @medicsforrare
Giuseppe Lopalco @GiuseppeLopalc2
473 Followers 440 Following Associate Professor in #Rheumatology at @unibait | Member of @official_ASAS and AIDA Network | Editor for @ojrarediseases and @Frontimmunol
Rare Disease UK @rarediseaseuk
20K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Rosaria (Sara) Talari... @SaraTalarico2
525 Followers 657 Following MD, PhD. Rheumatologist at the Azienda Ospedaliero Universitaria Pisana. ERN ReCONNET Scientific Coordinator. Working on Rare and Complex Diseases, Behçet.
ImmunAID_EU @ImmunAID_EU
289 Followers 33 Following Official account of #ImmunAID project. For improved diagnostic & clinical management of patients with #autoinflammatory diseases. Funded by @EU_H2020 programme
Ataxia_aware CIO 1184... @Ataxia_aware
4K Followers 3K Following #Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #StrongerTogether #MovementDisorder
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Rareminds @RaremindsUK
855 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following Improving outcomes for those living with rare conditions. Also find us at: https://t.co/kZWskP9Ojj
Matteo Piga @RMD_clinic
1K Followers 207 Following MD | Professor of #Rheumatology | I post case reports and updates on RMDs | opinions are my owns
RAIRDA @RAIRDA_org
867 Followers 808 Following The Rare AutoImmune Rheumatic Disease Alliance (RAIRDA) brings together @LUPUSUK, @wearesruk, @vascuk & @SjogrensUK to campaign for rare disease patients.
Anastasia Madenidou @AV_Madenidou
1K Followers 2K Following Clinical Research Fellow @OfficialUoM @ManchesterBRC @Kellgrencentre| Trainee Trustee @RheumatologyUK| Chair @EMEUNET Newsletter Sub-committee
Joanna Luke @jolo789
62 Followers 2K Following
Darius McQuaid @DariusMcQ
475 Followers 226 Following Reporter @_moneymarketing former reporter @capitalcom & finance reporter @Daily_Express finalist in @TheDrum awards
Sean J. Campbell @seanjca
156 Followers 5K Following Policy, Res, and Comms - justice, education and health
matt @blaikie23
2 Followers 397 Following
Octavia Hart @TaviH31
1 Followers 86 Following
Shanwaz Basha @ShanwazBasha
9 Followers 375 Following Nothing so special that it needs your attention
Amanda Ricehouse @AmandaRicehouse
1 Followers 58 Following Mom of an #HA20 baby, Georgie, age 2. Here to learn even more about #HaploinsufficiencyofA20 and #RareDisease.
Lisa Collard @lisacollard
63 Followers 354 Following
Fatima Abbas @FatimaA49299832
7 Followers 214 Following
Dr chiman Mahmood @dr_chiman
11 Followers 82 Following
Nomes @Over_D3pressed
0 Followers 10 Following
Saim malak @Malak1Saleem
22 Followers 833 Following
Nomi @fartoodepressed
0 Followers 15 Following
Darren @darrenjc46
91 Followers 849 Following
Kriscy cp @KriscyCp
28 Followers 331 Following
Aravind Palraj @Rheumat_Aravind
15K Followers 2K Following SR in Rheumatology | MMC, Chennai | 🛑 Tweets ≠ Medical Advice | https://t.co/GIsNalCL0w
Horus @DoxxieDonut
58 Followers 281 Following
ರಾಹುಲ್ �... @Dr_rahul32
560 Followers 1K Following a doctor by profession.. MD Medicine, DrNB (clinical Immunology & Rheumatology)..Rheumatologist.. ||जननी जन्मभूमिश्च स्वर्गादपि गरीयसी||
Copper Cache @CopperCache
2 Followers 33 Following
erdem_gurel_ @erdemgurel5
54 Followers 828 Following MD. Internist,Rheumatologist Istanbul University
Eleanor McAdam @EleanorM97
12 Followers 130 Following
Lang Tran @langmtran
2 Followers 43 Following
UWE Health & Care Res... @CHCR_UWE
2K Followers 666 Following Centre for Health & Care Research, UWE Bristol. Outstanding health & care research with impact. See website for research themes. See you on Bluesky/LinkedIn.
TotusTuusHome @TotusTuusHome
4 Followers 65 Following
Elena M. Robles @Elenatalcual
242 Followers 968 Following Medicina Interna/EAS/TBC/León/Madrid/PDH/CB/LPZ
Becki Nunn @BeckiNunnnn
958 Followers 997 Following Rare disease patient and ex medic. Disabled, caught between services and desperate for my life back.🏳️🌈♿
Timothy Shifflett @Timtrapper25
0 Followers 36 Following
Luke Alsford @LukeAlsford
722 Followers 3K Following News Reporter @MetroUK || always happy to chat at [email protected]
yaya @fleurcheriesh
4 Followers 37 Following
Hallie Powers @HeyItsHallie_
33 Followers 122 Following Lover of all things nature. Building a happy life, home & family in the Finger Lakes, NY. Controversial, Conservative, 'Conspiracy Theorist' 🤍 Christ is King
Eczema RDC @RdcEczema4128
52 Followers 566 Following Nous sommes une organisation sans but lucratif des malades de le peau : ECZEMA RDC, asbl
olja @olja78719313
65 Followers 290 Following u datom trenutku istorije ponosno nosim titulu “ boljševičko-ustaška budala”
Lindsay T @LindsayTurnerPM
1K Followers 2K Following Clinical Guidelines Programme Manager @RheumatologyUK Healthy flexitarian foodie. Runner. Tea lover. Lucky mum of 2.
Jenna Williams @JennaWi69177160
378 Followers 843 Following Normal people finally have a voice. #2025
Suecq B @suecq_b
1 Followers 12 Following
jam van laar @jamvanlaar
10 Followers 30 Following
Clare McGinty @McgintyClare
39 Followers 276 Following
guru vijay C @drguruvijay
2 Followers 128 Following
Linda Hunn @LindaHunnEMNODN
269 Followers 247 Following Director/Lead Nurse for East Midlands Neonatal ODN. Passionate about improving patient experience and standards of care. Own views
Vasculitis - In memor... @vascuk
4K Followers 3K Following Vasculitis - A Rare Rheumatic Autoimmune Disease
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
EURORDIS-Rare Disease... @eurordis
31K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Lupus Europe @LupusEurope
4K Followers 367 Following Lupus Europe is the umbrella association of currently 32 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.
EATC for Children @EATC4Children
743 Followers 657 Following The Experimental Arthritis Treatment Centre for Children is a national research centre dedicated to testing better medicines for children with MSK conditions
BSR @RheumatologyUK
16K Followers 1K Following We're taking a short break from posting while we review our long-term presence on X. Stay connected via other socials or [email protected]
ERN ReCONNET 🇪🇺 @ern_reconnet
3K Followers 864 Following 🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
MedicsforRareDisease @MedicsForRare
5K Followers 2K Following This account is no longer active, please continue to follow our work on Instagram and Bluesky! @medicsforrare
Dr. John Cush @RheumNow
26K Followers 452 Following Know-it-Now. Info on RA, Stills disease, Lupus, Gout, Pregnancy, Spondylitis, Psoriasis, Drug Safety, Rheumatology Research, Medical Education & Drug Evaluation
EULAR @eular_org
23K Followers 1K Following The European Alliance of Associations for Rheumatology. We look forward to welcoming you to EULAR 2027 in Berlin.
Rare Disease UK @rarediseaseuk
20K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
American College of R... @ACRheum
36K Followers 4K Following Global medical society providing education, research, advocacy, and practice management support to over 10,500 rheumatology professionals since 1934.
NHS England @NHSEngland
507K Followers 2K Following We lead the NHS in England to deliver high quality services for all.
ImmunAID_EU @ImmunAID_EU
289 Followers 33 Following Official account of #ImmunAID project. For improved diagnostic & clinical management of patients with #autoinflammatory diseases. Funded by @EU_H2020 programme
Ataxia_aware CIO 1184... @Ataxia_aware
4K Followers 3K Following #Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #StrongerTogether #MovementDisorder
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Rareminds @RaremindsUK
855 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following Improving outcomes for those living with rare conditions. Also find us at: https://t.co/kZWskP9Ojj
Cure NF2 Foundation U... @nf2biosolution1
472 Followers 452 Following Volunteer, patient led charity. Dedicated to NF2 Research. Raising awareness through advocacy, support & hope. Fundraising for new treatments or a cure to NF2.
RAIRDA @RAIRDA_org
867 Followers 808 Following The Rare AutoImmune Rheumatic Disease Alliance (RAIRDA) brings together @LUPUSUK, @wearesruk, @vascuk & @SjogrensUK to campaign for rare disease patients.
Hugh Pym @BBCHughPym
96K Followers 1K Following BBC News Health Editor covering all aspects of health (UK and Global). Politics and economics of the NHS. Thoughts from staff and patients always welcome.
Epilepsy Society @epilepsysociety
30K Followers 2K Following Transforming lives through advocacy, research & care 💜[email protected] 01494 601 400📞Info- our website
ORDIndia @ORDIndia
2K Followers 965 Following National rare disease advocacy, 24/7 patients hotline, engage Hospitals, Physicians, Pharma/Biotech/Dx industry, Orphan drugs act for India, Global Alliances
North East & Yorkshir... @NEYGenomics
1K Followers 477 Following Embedding genomics into routine clinical care, delivering faster and more accurate diagnoses, personalised treatment, and prevention.
Dr Nima Ghadiri @DrNimaGhadiri
2K Followers 7K Following Medical Ophthalmology Consultant (Ophthalmic Physician) | FRCP | Med Ed | HCA Professor | Uveitis Lead Clinician | Ocular Inflammation | Neuro 👁️⚕️🧠📖
RNIB Connect Radio @RNIBRadio
9K Followers 6K Following We’re no longer posting on X. You can get in touch with us on 0303 123 9999 or [email protected]. Follow on Bluesky, Threads, Instagram, or Facebook.
The RCN @theRCN
168K Followers 3K Following This account has been archived. Follow us on other social media channels.
PRM Assist @PrmAssist
503 Followers 1K Following The all-in-one mobile application for booking airport assistance as a passenger with reduced mobility (PRM) https://t.co/AAfDgUpLdR
RCGP Cymru Wales @RCGPWales
2K Followers 2K Following We are here to upskill general practice and influence decision makers to enable GPs and their practice teams to provide an improved patient experience.
RCGP Scotland @RCGPScotland
4K Followers 2K Following We encourage the highest standards of general medical practice and act as the voice of GPs in Scotland on education, training, research and clinical standards.
RCGPNI @rcgp_ni
4K Followers 2K Following Official Twitter channel of the Northern Ireland Council of The Royal College of General Practitioners
Katy Plant @DrKatyPlant
12 Followers 51 Following Core Anaesthetic Trainee Honorary Clinical Fellow, University of Liverpool
GlobalSkin @IADPO
3K Followers 680 Following The International Alliance of Dermatology Patient Organizations is a global voice for skin patient-centred research, advocacy & support.
The Neurological Alli... @NeuroAlliance
7K Followers 889 Following 100+ organisations working together to make sure everyone affected by neurological conditions can access the support they need, when they need it #BackThe1in6
Steve Barclay @SteveBarclay
59K Followers 706 Following MP for NE Cambridgeshire Promoted by Steve Barclay of MJS House, Wisbech Road, PE15 0BA
Metabolic Support @MetabSupport
405 Followers 401 Following The leading patient organisation for inherited metabolic disorders supporting thousands of patients worldwide to live well today, tomorrow
Disability Wales @DisabilityWales
14K Followers 2K Following Striving for the rights of all disabled people. Ymdrechu dros hawliau pob person anabl.
NHS Central and South... @CaS_Genomics
2K Followers 1K Following Genomic medicine provider for patients in the West Midlands, Thames Valley and Wessex. Sign up to our mailing list here: https://t.co/tI8gyM7w1J
Team Parkinson's 💙 @TeamParkinsons
2K Followers 256 Following We are #TeamParkinsons💙. A movement of people united to end Parkinson's forever. Join us!
Harry Leitch @HGLeitch
3K Followers 2K Following
The Festival of Genom... @FoGenomics
5K Followers 4K Following The Festival of Genomics, Biodata & AI is returning to Boston on June 3rd- 4th 2026.
D4 Pharma @D4Pharma
736 Followers 1K Following A community of pharma and tech professionals using data-driven approaches to improve drug R&D. The mission of D4 is to create meaningful change for patients.
Department of Paediat... @OxPaediatrics
877 Followers 539 Following @UniofOxford, @OxfordMedSci, world leader in child health research, from early proof-of-concept fundamental science to clinical application.
Breathe Creative Anad... @CreativeBreathe
143 Followers 201 Following We offer arts for wellbeing projects, workshops and training in Drama, Dance, Film, Animation, Visual Arts and Music & Voice.
BSPDMerseyside @BspdMerseyside
203 Followers 119 Following Merseyside branch of the British Society of Paediatric Dentistry Follow for news on our meetings and all things paediatric dentistry!
Faculty of Health and... @LivUniHLS
3K Followers 677 Following We're no longer posting to X. Our pinned post contains all the details you need to keep up to date with our Faculty news.
FAST UK - Angelman Sy... @cureangelmanuk
71 Followers 4 Following FAST UK (FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS UK) is a UK-based charity with a mission to find a cure for Angelman Syndrome as quickly as possible
ITP Support Assoc @ITPSupportAssoc
2K Followers 865 Following UK charity supporting sufferers of the auto immune bleeding disorder Immune Thrombocytopenia. Views expressed are those of individuals & not the ITP Supp Assoc
WomenZone @womenzonebfd
975 Followers 788 Following Empowering women across the Bradford District. 01274 665270 I [email protected] I https://t.co/HyjNQWqxet
FOP Friends @FOPFriends
725 Followers 519 Following FOP is one of the rarest and most debilitating conditions known to medicine, causing bone to form in muscles. Charity #1147704
Neuroendocrine Cancer... @ncukcharity
5K Followers 5K Following Supporting the #Neuroendocrine Cancer community, incl diagnosis, access to best treatment & care - and stimulating research. Helpline 0800 434 6476
CURE SYNGAP1 aka SynG... @cureSYNGAP1
11K Followers 1K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
PIP-UK @Polandsyndromep
1K Followers 2K Following Poland Syndrome Charity https://t.co/VMrt8PwiQQ Poland Syndrome is a rare birth difference affecting hands and chest.
Peter @CureDMCharity
260 Followers 615 Following Cure DM exists to help those with Myotonic Dystrophy, their families and carers. We Raise Awareness, Provide Family Support and Facilitate Research.
Schinzel-Giedion Synd... @foundation_sgs
166 Followers 271 Following Raising awareness, facilitating research, improving access to scientific information and fundraising to support research and families internationally.
CSNK2A1 Foundation @csnk2a1org
581 Followers 269 Following We are focused on finding a cure for OCNDS & ensuring affected individuals have the opportunities and supports necessary for happy & full lives #ocnds #csnk2a1
Gilbert's Syndrome @GilbertsSyndrom
969 Followers 76 Following 1 in 20 people may have Gilbert’s Syndrome. Action on Gilbert's Syndrome helps them, family and friends, and medical professionals via the website.
Glut1 Deficiency UK @Glut1UK
276 Followers 385 Following A parent led charity, dedicated to improving the lives of those affected by Glut1 Deficiency through support, education and medical research.
Great Ormond Street H... @GOSHCharity
93K Followers 22K Following Until no childhood is lost to serious illness. Supporting @GreatOrmondSt
BDFA @BattenDiseaseuk
588 Followers 837 Following Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure.
NAITbabies.org @naitbabies
553 Followers 436 Following #FNAIT Life threatening bleeding disorder caused by the maternal immune response against fetal platelets.
Jnetics @JneticsUK
1K Followers 3K Following Jnetics helps prevent & diagnose Jewish genetic disorders in the UK. Know your risk of passing a disorder to your future child. 🧬 https://t.co/exu5lHRGnV
UoAEpidemiology @UoAEpi
1K Followers 694 Following The Epidemiology Group at the University of Aberdeen. We also do trials , drug registries and health services research.
CHECT UK @ChectUK
3K Followers 2K Following Childhood Eye Cancer Trust - a charity dedicated to helping people affected by retinoblastoma. We provide support, raise awareness and fund research.
University of Liverpo... @LivUni
80K Followers 938 Following We're no longer posting to X but will continue to respond to direct messages. Keep up to date with our latest news and updates here: https://t.co/o9cJzhZrP1Trends for United States
You might like
