Lesley C Booth PhD MBE @LCBMBE
Deputy Director at @camraredisease working to improve outcomes for people living with rare and undiagnosed conditions. camraredisease.org United Kingdom Joined March 2018-
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And it's a wrap for #RESPOND @WestMidHospital, we had a wonderful afternoon with the housekeeping team, porters, #Osterley2 staff & docs! Thank you for being an amazing part of being the difference in #responserates @NDSurgicalSci @McCullochP @DeanJuddRN @AmrinderSayan 🎉🤗😄❤️💛
Check out our CEO, Peter Mountney and Global Head of Digital at Olympus, Dr Karsten Klose in this exclusive interview at the #HIMSS23 European Health Conference! Watch the full interview here: lnkd.in/eiT2-AFd #ai #HIMSSTV @p_mountney @Olympus_Corp @OlympusMedEMEA
Following our recent acquisition by @Olympus_Corp, we are proud to announce that we received the 'Exit of the Year' award at the UK Angel Investment Awards 2023, backed by AI Seed! @UKBAngels, @Twinpathvc @AlbionVC @UCL_Business #UKBAAAwards #venturecapital #vc
Is your charity, organisation or company pioneering to improve the lives of those living with rare diseases? Take the leap & showcase your work at #RAREsummit23 o 300 rare disease stakeholders to help you take flight. Visit camraredisease.org/raresummit23/ for info & to contact us
The importance of trust and staff engagement for patient safety was presented at the #12NHPSUCG conference 👏👏👏 @NDSurgicalSci
Day 2 at the #12NHPSUCG Conference lifts off with Dr Ahmed speaking about the importance of #Trust and staff engagement for a patient safety culture #patientsafety
Who fancies a summer holiday family fitness challenge? We’re co-hosting the 5k @Shelford_FunRun on Sept 10 with @GSPlayscape & places are filling up fast! If 5k sounds daunting we also have a new sensory 1k courtesy of @Power2InspireUK Reg at ShelfordFunRun.co.uk #5k
Looking for fun for all the family? Join us on 10 Sept for the #ShelfordFunFun 5k 2023! If 5k isn’t for you @Power2InspireUK will also be there with their Super Sensory 1k! Find out more and sign up now: shelfordfunrun.co.uk
RARE Youth Revolution is a news platform for young people with rare diseases, & we're excited they'll be exhibiting at #RAREsummit23 on 12th October. They empower the next generation of RARE disease advocates to bring about dramatic change. Meet them at camraredisease.org/raresummit23
Great news for a great team at Odin#medtech#patient#AI
We are delighted to officially announce our recent acquisition by global #MedTech company, Olympus! Discover how our #Cloud #AI is set to revolutionise patient care in #Endoscopy: tinyurl.com/367e3sn6 @Olympus_Corp @OlympusMedUKIE
Read more about how the support of the UK Space Agency's 'Space to Innovate' Programme enabled us to demonstrate the benefits of our #Cloud #AI👇 tinyurl.com/yc7223vk @spacegovuk
For #throwbackthursday we are revisiting our 'Equipped for life project', which offers some really important insights into the lived experiences of ex-veterans: samebutdifferentcic.org.uk/equipped-for-l… #throwbackthursday #armyveterans #shareyourstory @tnlcommunityfund
This is Ron from Osterely2 @WestMidHospital, Ron likes to champion the daily value which is stuck on his notes as a physical reminder to refocus and regroup during his shift 😎 #teamwork #patientsafety #humanfactors
It's #UniqueFeetCam news time!! Read on to see where our Unique Feet have taken us! This month we have a bumper-packed edition with so much good news and valuable insights to share mailchi.mp/camraredisease…
It’s a question of white balance. Our home, swimming pool, larder and happy place.
Thanks so much for your enthusiasm and mitochondria myth-busting session for our #Pint23 night last night @LlamaAlannah! @MRC_MBU
We are delighted to officially announce our recent acquisition by global #MedTech company, Olympus! Discover how our #Cloud #AI is set to revolutionise patient care in #Endoscopy: tinyurl.com/367e3sn6 @Olympus_Corp @OlympusMedUKIE
Our #RESPOND Newsletter for May! Enjoy #humanfactors @NDSurgicalSci
2 weeks to go til @pintofscience!! Come and explore brains & #genetics and the marvels & mischief of #mitochondria with fabulous #Cambridge researchers There’ll be fun & games & stunning mito photography by Andy Li Brains pintofscience.co.uk/event/rare-mind Mito pintofscience.co.uk/event/rare-body
The #RESPOND Team presenting their progress at Grand Surgical Rounds! @NDSurgicalSci @McCullochP
Today we presented at @UniofOxford @NDSurgicalSci #GrandRounds, the audience was great, and asked very interesting questions! #TeamRespond #humanfactors #patientsafety
The #RESPOND team, all smiles after a super productive #creativity session 😀
Here we have Anne and Mr Ali, they are super proud of each other and their great #teamwork "Mr Ali worked hard to rearrange the list at my request for a deteriorating patient" Thank you both, @AnneCM11 @BucksHealthcare @NDSurgicalSci @Poetlaurieate1 @McCullochP
Thank you @AnneCM11 our lovely Research Nurse for #RESPOND @BucksHealthcare. She is super pleased with the success of 3 (yes 3) #safetyhuddles a day, which use the team values as a reminder/theme for great teamwork and support #patientsafety #humanfactors
I visited @BucksHealthcare today! #teamwork and senior support is is very evident - senior docs supporting the lovely new FY1s, And of course @AnneCM11 supporting me throughout the visit today 🤗😊🤗 thank you!
The Bottom Line IBD @bottomlineibd
9K Followers 4K Following Promoting patient education in #IBD (Crohn's & UC). I help patients tell their stories. In the real world I'm Rachel, an IBD patient advocate. Also at @IBDwomen
Pearl Avery 💙IBDNu... @pearl_avery
2K Followers 4K Following PhD candidate #IBD #GASTRO #ANP #Digital views my own #NHSCEP @CrohnsColitisuk @BJNursing GI/IBDNurse 2018 #NHS 🦋 https://t.co/5Puj5ucMnC
Nigel H 🎸🎸🎸�... @Crohnoid
3K Followers 3K Following My book - "Wrestling The Octopus” is not about octopus wrestling. Free download from my website. ...and there's a podcast - https://t.co/lNYobuSIjP
Ian Daniels FRCS @bottomdoc
6K Followers 5K Following Consultant Colorectal & General Surgeon, Social Commentator, a bit of a fool and Yoda Lookalike!!! All views are entirely mine!
Sahara Fleetwood-Bere... @Sahara88uk
9K Followers 7K Following #HealthAdvocacy; #IBD #Ostomy #ADHD #ChronicPain #Fibro #MentalHealth. Healthcare Pt. Consultant. @IBDSuperHeroes 🐝#Nature #Gardening #Plants #Yoga🧘
Frank McDermott @Mcfark
4K Followers 2K Following Consultant @royaldevonnhs #colorectalsurgery Editor @bjsopen, CD @SWGenomics, hon sen lecturer @uniofexeter
ColostomyUK @ColostomyUK
6K Followers 3K Following Charity that SUPPORTS and EMPOWERS people living with a #stoma.Your voice on the bigger issues; campaigning, & running projects. #StomaAware @TeamColostomyUK
Vikki aka doubletroub... @vikkipalmer68
2K Followers 5K Following medical retired from the NHS Double ostomate urostomy colostomy patient advocate blogger passionate about raising urology awareness. All views are my own
Victoria Cuthill MSc ... @VickyCuthill
1K Followers 2K Following Nurse Consultant & Lead Nurse @PolyposisRegUK & @StMarksGenomics |Previous @macmillancancer genomics clinical fellow | @StMarksHospital
JC @JamesConlon_
19K Followers 8K Following
Rebecca 💙 @Resus2Runner
2K Followers 883 Following My journey from cardiac arrest to sport🏊♀️🚴♀️🏃♀️Stoma • bowel cancer. Once on Radio4 DNACPR • ReSPECT • EOLC • Dignity in Dying. #TacklingTheStomaStigma💜
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following Improving outcomes for those living with rare conditions. Also find us at: https://t.co/kZWskP9Ojj
Michael Bahrami-Hessa... @mikebahrami
415 Followers 941 Following Putting Patients and Communities at the Heart of Health Data. Microbiologist by training, science communicator by passion. All views are my own. 🇵🇭 🇬🇧
Aneel Bhangu @aneelbhangu
7K Followers 5K Following Professor of Global Surgery | Consultant Colorectal and General Surgeon | Researcher & Innovator
Team Colostomy UK @TeamColostomyUK
2K Followers 745 Following PDRL and Wheelchair Rugby League from @ColostomyUK. 🏉#TacklingTheStomaStigma to help create a more #StomaAware UK. #UpThePurps💜
Susannah @lliheus
970 Followers 855 Following Nurse, ostomate/dyson & patient rep for ACPGBI. Focusing on supporting patients, families & surgeons after serious adverse events.
European Society of C... @escp_tweets
15K Followers 4K Following ESCP is dedicated to promoting and advancing the prevention, treatment, education and research into colorectal disease internationally.
@BEAUTIFULMUMSIE @BEAUTIFULMUMSIE
5K Followers 6K Following Beautiful daughter Laura 31 died Colorectal Cancer Laura's blog https://t.co/gSDWbjX1kp Assessor @JAG_Endoscopy Lecturer Grandma Goldendoodle Mum
Trevor Graham @trevoragraham
4K Followers 611 Following Director, Centre for Evolution & Cancer @CEC_ICR @ICR_London Mixing maths, genomics & evolution. Early detection, metastasis & drug resistance. Bowel cancer.
Kevin Monahan @kevinjmonahan
3K Followers 2K Following Gastroenterologist & Prof of Practice from @StMarksGenomics with an interest in hereditary bowel cancer and occasional rants about other random things
FaitheMaugham @30tVO9au3uMx57z
49 Followers 2K Following
Mental Health Researc... @MentalHealthRIC
459 Followers 557 Following A partnership between Mersey Care NHS Foundation Trust and the University of Liverpool to improve future mental healthcare services and treatments.
Anastasia Tempest @Anastasia_T22
1K Followers 8K Following I have cerebral palsy. I was dumped on the doorstep of the National Children’s Home, (now Action For Children) from birth. I always try my best in life.
Xiaoxiao, PhD @MusicXiaoxiao
559 Followers 3K Following #Beatbox learner | Dir @dementia_radio |Amb @UKCISA | #Music #Dementia #Ageing #Wellbeing | #PerformanceScience| @DurhamAlumni |@LeedsAlumni | @LivUniAlumni
Luna @CoralC3474
6 Followers 716 Following
Luna @etrichor72938
10 Followers 714 Following
Luna @melancholy20581
9 Followers 712 Following
Luna @wmsclmldy35781
21 Followers 711 Following
Luna @Flora4174115018
11 Followers 671 Following
McCeyte @CeyteMc5948
94 Followers 4K Following
Paulette @Slouteen168228
57 Followers 4K Following
Ward @toseshe74390
39 Followers 3K Following 아주 아름다운 나라예요. 당신 나라의 남자들은 매우 신사적입니다. 당신과 친구하고 싶어요 https://t.co/vDQL2UJlPT LiYY1225543 https://t.co/alccDqc15i
Science Collected @ScienceCollect1
113 Followers 339 Following Continued Education. Continued Conversation.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Rareminds @RaremindsUK
856 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
Gemma Chandratillake @GemmaChand
1K Followers 699 Following Genetics, genomics, genetic counsel(l)ing, generally waxing helical Work for @east_genomics and @Cambridge_Uni Vice-Chair @BritSocGenMed,Trustee @camraredisease
Philip Wiles @WilesPhilip
57 Followers 194 Following Science communication goblin, unfortunately I labour under the misapprehension I'm funny. My brain works when tea does. Views my own, so not worth quoting
Hannah Scott @HannahM_Scott20
959 Followers 3K Following Research assistant @QMUL | PhD candidate @CSI_KCL
Greg Findlay @gregfindlaylab
1K Followers 2K Following Cell Signalling, Embryonic Stem Cell Biology & Developmental Disorders @mrcppu
Care & Respond @CareAndRespond
87 Followers 539 Following Create a health passport and engage friends & family support when most needed. Developed in partnership with the NHS.
Stealth Belt Inc. @stealthbelt
966 Followers 503 Following Stealth Belt Ostomy Support Belt is an innovative and stylish ostomy support belt made to hold your ostomy securely and discreetly in place.
Celia MAPP, PGCE, Lev... @Positive_slns
272 Followers 323 Following Interests in supporting children socially and emotionally. Every child should excel. Our words are powerful. Love life.
Daz Baalham @DazB94
332 Followers 4K Following 30, Gardener, Community Radio Presenter, passionate about local radio. Rare Chromosome and Fibromyalgia Individual.
SIIL Ostomy 💜 @Siilostomy
499 Followers 2K Following 🚀 SIIL Ostomy is more than just #ostomy clothing, it's a symbol of hope and empowerment for ostomates everywhere. #ostomypride #ostomyawareness
Lesly Jo Kujawa @lesly_kujawa
50 Followers 410 Following Neuroscience / Rare Disease Consultant, Pharmaceutical and Biotechnology. Certified Yoga Instructor
BSGM @BritSocGenMed
3K Followers 2K Following The British Society for Genetic Medicine provides a forum for professionals involved in #genetics and #genomics as a clinical service and research.
Sivesh K Kamarajah @Sivesh93
5K Followers 4K Following @NIHRcommunity Doctoral Fellow @UoB_IAHR @NIHR_GSU 🌏. General Surgery SpR. Collaborations 🤝 @gecko_study | @STARSurgUK 🇲🇾➡️🇬🇧
Manchester Rare Condi... @mft_iMRare
735 Followers 329 Following Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions
Cure NF2 Foundation U... @nf2biosolution1
471 Followers 453 Following Volunteer, patient led charity. Dedicated to NF2 Research. Raising awareness through advocacy, support & hope. Fundraising for new treatments or a cure to NF2.
savesightnoweurope @savesightnoweu
60 Followers 214 Following
John A @r3darmy
878 Followers 2K Following Loving family, SUP, running, reading, TV, travel, music, movies, footy (#coyg) & life - for as long as Stage 4 Bowel Cancer will let me !
Beyond the Diagnosis @BeyondtheDx
8K Followers 5K Following Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
SamebutDifferent @SBDRareProject
2K Followers 3K Following Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Poetlaurieate @Poetlaurieate1
13 Followers 50 Following
Dean Judd @DeanJuddRN
899 Followers 2K Following NHS Matron for Ambulatory Care/Same Day Emergency Care at Chelsea and Westminster NHS, SJA Volunteer District Clinical Officer- South London and Youth Leader.
Dr Ravindhi Murphy @ravindhi
469 Followers 757 Following Lower GI medical oncologist and medical adviser at Centre for Drug Discovery, Cancer Research UK.
@PPIEglobal #GlobalHe... @PPIEglobal
1K Followers 5K Following Creator https://t.co/pI6DQ8186g FRSA. Frm MacArthur Fellow; VR Fellow KCL; @CombatAmrOrg @AgeofthePhage @WAI_WomenAid @PidaRipley #WorldPhageWeek -see linked websites.
Carrie Tierney Weir �... @Carries_patter
35 Followers 113 Following Communicator. Haiku writer. Forest bather. Volunteer for Bowel Research UK charity.
SPIRE Network @SPIREConcept
423 Followers 1K Following SPIRE-Severe neurological imPairment in IREland; examining prevalence, healthcare utilisation and parental experience. Supported by CHI Research & Innovation
Canadian Autoinflamma... @CdnANetwork
244 Followers 497 Following A Canadian not-for-profit dedicated to empowering autoinflammatory patients, families and researchers.
Natasha Barr @caretently
91 Followers 265 Following Creating content with CARE for the rare disease community. Medical writing, translation and content creation services. Formerly worked at @vascern + @orphanet
Cure Usher @cureusher
529 Followers 371 Following Raising funds & awareness for Usher syndrome research. Secretariat for All Party Parliamentary Group. Registered charity, 1181293.
HBA Support @hba_support
174 Followers 432 Following We've decided to no longer post on X. You can find us on FB, Insta or LI – please join us there to stay up to date with brain aneurysm support, news & research
The KCNC1 Foundation @KCNC1foundation
396 Followers 1K Following Supporting research to find a cure for all those impacted by KCNC1-related disorders. 501(c)(3) Operating under The Rare Village as our fiscal sponsor.
Alexandra Downes @PaedsDoctorAlex
14 Followers 162 Following Neonatal Registrar BSc Human Genetics @M4RareDiseases Clinical Ambassador @LondonPaeds Education Subgroup Member
The Bottom Line IBD @bottomlineibd
9K Followers 4K Following Promoting patient education in #IBD (Crohn's & UC). I help patients tell their stories. In the real world I'm Rachel, an IBD patient advocate. Also at @IBDwomen
Nigel H 🎸🎸🎸�... @Crohnoid
3K Followers 3K Following My book - "Wrestling The Octopus” is not about octopus wrestling. Free download from my website. ...and there's a podcast - https://t.co/lNYobuSIjP
Ian Daniels FRCS @bottomdoc
6K Followers 5K Following Consultant Colorectal & General Surgeon, Social Commentator, a bit of a fool and Yoda Lookalike!!! All views are entirely mine!
Sahara Fleetwood-Bere... @Sahara88uk
9K Followers 7K Following #HealthAdvocacy; #IBD #Ostomy #ADHD #ChronicPain #Fibro #MentalHealth. Healthcare Pt. Consultant. @IBDSuperHeroes 🐝#Nature #Gardening #Plants #Yoga🧘
Bowel Cancer UK @bowelcanceruk
49K Followers 2K Following We're the UK's leading bowel cancer charity. Our vision is a future where nobody dies of the disease. #BowelCancerUK
Frank McDermott @Mcfark
4K Followers 2K Following Consultant @royaldevonnhs #colorectalsurgery Editor @bjsopen, CD @SWGenomics, hon sen lecturer @uniofexeter
Genomics Education @genomicsedu
22K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
Claire Taylor @claire_taylor22
2K Followers 426 Following Chief Nursing Officer, Macmillan & Senior Oncology Nurse @LNWH. PhD, RN, MBE. Opinions expressed are my own.
ColostomyUK @ColostomyUK
6K Followers 3K Following Charity that SUPPORTS and EMPOWERS people living with a #stoma.Your voice on the bigger issues; campaigning, & running projects. #StomaAware @TeamColostomyUK
Vikki aka doubletroub... @vikkipalmer68
2K Followers 5K Following medical retired from the NHS Double ostomate urostomy colostomy patient advocate blogger passionate about raising urology awareness. All views are my own
Crohn's & Colitis UK @CrohnsColitisUK
41K Followers 4K Following Crohn’s? Colitis? We’ll face it together.
Steven D Wexner MD, P... @SWexner
42K Followers 2K Following Leadership: Academic Surgery @MedStarHealth; @ASCRS_1; @SAGES_Updates; EIC @SurgJournal; @AmColSurgCancer; @AmCollSurgeons; Video Host: https://t.co/10bRowQ24L
Colitis Cop @ColitisCop
3K Followers 3K Following FIM/TFC with Cleveland Police. Ulcerative Colitis, Surgery’16 and now live and work with a stoma and bag. Part of @TeamColostomyUK RL team to spread awareness
SueB @littlemissileo
2K Followers 383 Following PhD Student #ParastomalHernia. CI @PapooseStudy and @PropherStudy Passionate about #parastomalhernia, PROMs #colorectalresearch and Gin! All views my own.
Victoria Cuthill MSc ... @VickyCuthill
1K Followers 2K Following Nurse Consultant & Lead Nurse @PolyposisRegUK & @StMarksGenomics |Previous @macmillancancer genomics clinical fellow | @StMarksHospital
Charlie Lees @charlie_lees
22K Followers 3K Following I write about inflammatory bowel disease providing inspiration, education and deep community. I am Professor of Gastroenterology and UKRIFLF. I also run a lot.
Rachel Campbell 💙 @ibdnurse
1K Followers 536 Following IBD Advanced Clinical Nurse specialist on a mission !!! 30 years in Gastroenterology (I know! ) opinions are my own.....
JC @JamesConlon_
19K Followers 8K Following
About IBD (Amber): Wr... @aboutIBD
6K Followers 3K Following #UC '89, #jpouch '99. Creating evidence-based #IBD patient education to help you know more about IBD. Find #AboutIBDPodcast in any podcast app and on YouTube.
Rebecca 💙 @Resus2Runner
2K Followers 883 Following My journey from cardiac arrest to sport🏊♀️🚴♀️🏃♀️Stoma • bowel cancer. Once on Radio4 DNACPR • ReSPECT • EOLC • Dignity in Dying. #TacklingTheStomaStigma💜
UCL Technology Fund @UCLTF
814 Followers 605 Following Investing in intellectual property commercialisation opportunities arising from @UCL. Fund managed by @AlbionVC, in collaboration with @UCL_Business.
Gemma Chandratillake @GemmaChand
1K Followers 699 Following Genetics, genomics, genetic counsel(l)ing, generally waxing helical Work for @east_genomics and @Cambridge_Uni Vice-Chair @BritSocGenMed,Trustee @camraredisease
ACGS @acgs_news
2K Followers 838 Following Association for Clinical Genomic Science. Follow us to hear the latest ACGS updates.
Great British Menu @GBMofficial
48K Followers 2K Following Please find us on insta @greatbritishmenu Tiktok @greatbritishmenuofficial bsky @greatbritishmenu.bsky.social https://t.co/W0UzC7nc5w
BJS Academy @BJSAcademy
5K Followers 2K Following Leading lifelong #surgicaleducation: surgical news, journal updates, clinical trials, #MyNightOnCall, blogs, digests, tutorials. With @BJSurgery and @Young_BJS
Kate Nash @Katevnash
192 Followers 422 Following
Sino Biological Inc. @Sino_Biological
6K Followers 386 Following Global Leader in Recombinant Proteins, Antibodies & Reagents | Custom CRO Services | Now Offering Enzymes & Signaling Proteins with @SignalChem
BSGM @BritSocGenMed
3K Followers 2K Following The British Society for Genetic Medicine provides a forum for professionals involved in #genetics and #genomics as a clinical service and research.
NHS East Genomics @East_Genomics
2K Followers 1K Following Providing genetic and genomic testing for NHS cancer and rare disease patients in the East Midlands & East of England. https://t.co/fHVC57KUvr
Bec Hanley @BecHanley1
474 Followers 383 Following Facilitator, Shared Learning Group on Involvement, in partnership with Derek Stewart for https://t.co/0kBRG49o7k, whale watcher and cake baker
Carrie Tierney Weir �... @Carries_patter
35 Followers 113 Following Communicator. Haiku writer. Forest bather. Volunteer for Bowel Research UK charity.
Beyond the Diagnosis @BeyondtheDx
8K Followers 5K Following Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
SamebutDifferent @SBDRareProject
2K Followers 3K Following Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
Cambridge DDU @CambridgeDDU
1K Followers 490 Following Infectious disease research from the Disease Dynamics Unit, Department of Veterinary Medicine, University of Cambridge.
SPIRE Network @SPIREConcept
423 Followers 1K Following SPIRE-Severe neurological imPairment in IREland; examining prevalence, healthcare utilisation and parental experience. Supported by CHI Research & Innovation
VJ Neurology @VJNeurology
21K Followers 567 Following The Video Journal of Neurology is dedicated to providing up-to-date information and international expertise about #Neurology. #Headache #Epilepsy #MS #ALS
I_DNA @_I_DNA
86 Followers 179 Following Touring art installation highlighting the stories of people with genetic conditions & their views on genomic medicine. Based on research of @imaginingfuture
Gastric Cancer Founda... @GastricCancerFD
2K Followers 194 Following The Gastric Cancer Foundation (GCF) is dedicated to improving the lives of people affected by #stomachcancer and to working with researchers to find a cure.
Alexandra Downes @PaedsDoctorAlex
14 Followers 162 Following Neonatal Registrar BSc Human Genetics @M4RareDiseases Clinical Ambassador @LondonPaeds Education Subgroup Member
Science Collected @ScienceCollect1
113 Followers 339 Following Continued Education. Continued Conversation.
Cambridge Infectious ... @CamInfectDis
2K Followers 905 Following Cambridge Infectious Diseases is a multidisciplinary community of infectious disease researchers in and around the University of Cambridge (@Cambridge_Uni), UK.
Canadian Autoinflamma... @CdnANetwork
244 Followers 497 Following A Canadian not-for-profit dedicated to empowering autoinflammatory patients, families and researchers.
Cure Usher @cureusher
529 Followers 371 Following Raising funds & awareness for Usher syndrome research. Secretariat for All Party Parliamentary Group. Registered charity, 1181293.
NoStomachForCancer @NoStomach4Cancr
2K Followers 2K Following To support research and unite the caring power of people worldwide affected by #stomachcancer.
FSHD Society British ... @FSHD_BC
157 Followers 221 Following Join the local FSHD Society chapter in BC. Support, resources, information, research, #FSHDhacks,#cureFSHD. We are stronger together. Tweets by @Asifa604
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
@PPIEglobal #GlobalHe... @PPIEglobal
1K Followers 5K Following Creator https://t.co/pI6DQ8186g FRSA. Frm MacArthur Fellow; VR Fellow KCL; @CombatAmrOrg @AgeofthePhage @WAI_WomenAid @PidaRipley #WorldPhageWeek -see linked websites.
Ambit @AmbitRD
27 Followers 35 Following Solving biopharma's biggest challenges through best-in-class talent, cutting edge data & analytics technology, and expertise in rare and specialty disease.
The KCNC1 Foundation @KCNC1foundation
396 Followers 1K Following Supporting research to find a cure for all those impacted by KCNC1-related disorders. 501(c)(3) Operating under The Rare Village as our fiscal sponsor.
Lesly Jo Kujawa @lesly_kujawa
50 Followers 410 Following Neuroscience / Rare Disease Consultant, Pharmaceutical and Biotechnology. Certified Yoga Instructor
EERR Investigación @EERRInvestigac1
18 Followers 194 Following Research group on Rare Diseases of the University of Granada.
Wittek Research Found... @WittekHCM
100 Followers 190 Following The Wittek Research Foundation is a non-profit supporting research to transform the prevention, diagnosis and treatment of hypertrophic cardiomyopathy (HCM)
PPP Life Sciences @PPP_LifeScience
9 Followers 26 Following Life Science policy from Public Policy Projects. Info. on report launches, thought leadership and event invitations. Main - @policy_projects
Goalball UK @GoalballUK
4K Followers 1K Following National Governing Body and proud charity for the Paralympic sport of goalball in the UK Registered Charity - England & Wales No. 1136892 Scotland No. SC045967
Vesigen Therapeutics,... @Vesigen
90 Followers 61 Following Vesigen is developing groundbreaking therapeutic products directed to intracellular targets using a scalable extracellular vesicle delivery technology.
Manchester Rare Condi... @mft_iMRare
735 Followers 329 Following Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions
Natasha Barr @caretently
91 Followers 265 Following Creating content with CARE for the rare disease community. Medical writing, translation and content creation services. Formerly worked at @vascern + @orphanet
HBA Support @hba_support
174 Followers 432 Following We've decided to no longer post on X. You can find us on FB, Insta or LI – please join us there to stay up to date with brain aneurysm support, news & research
LDNBSActionNetwork @LDNBSAction
70 Followers 118 Following The Leukodystrophy Newborn Screening Action Network is a coalition of leukodystrophy patient advocates dedicated to championing the cause of newborn screening.
HODA @HODAssoc
21 Followers 67 Following Hypertrophic Olivary Degeneration Association official Twitter account
Greg Findlay @gregfindlaylab
1K Followers 2K Following Cell Signalling, Embryonic Stem Cell Biology & Developmental Disorders @mrcppu
Biomedical Engineerin... @KingsImaging
7K Followers 1K Following This account has been archived. For news follow us on https://t.co/cX0AEhOqfB
savesightnoweurope @savesightnoweu
60 Followers 214 Following
Rare Patient Voice @rarepatientvoic
2K Followers 3K Following We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Unique @Unique_charity
8K Followers 2K Following Unique supports and informs anyone born w/a rare chromosome or gene disorder, their families and carers. Eurordis Patient Organisation Award winner.
Genomics England @GenomicsEngland
29K Followers 2K Following We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare







