Lesley C Booth PhD MBE
@lcbmbe
Deputy Director at @camraredisease working to improve outcomes for people living with rare and undiagnosed conditions.
ID: 976173443745026048
http://www.camraredisease.org 20-03-2018 19:07:40
727 Tweet
474 Followers
1,1K Following
Pearl Avery ๐IBDNurse Grandmother PhD Candidate
@pearl_avery
PhD candidate #IBD #GASTRO #ANP #Digital views my own #NHSCEP @CrohnsColitisuk @BJNursing GI/IBDNurse 2018 #NHS ๐ฆ pearlavery.bsky.social
Celia MAPP, PGCE, Level 2 coach
@positive_slns
Interests in supporting children socially and emotionally. Every child should excel. Our words are powerful. Love life.
John A
@r3darmy
Loving family, SUP, running, reading, TV, travel, music, movies, footy (#coyg) & life - for as long as Stage 4 Bowel Cancer will let me !
Susannah
@lliheus
Nurse, ostomate/dyson & patient rep for ACPGBI & ASGBI. Focusing on supporting patients, families & surgeons after major surgical complications.
Anastasia Tempest
@anastasia_t22
I have cerebral palsy. I was dumped on the doorstep of the National Childrenโs Home, (now Action For Children) from birth. I always try my best in life.
Frank McDermott
@mcfark
Consultant @royaldevonnhs #colorectalsurgery Editor @bjsopen, Deputy CD @SWGenomics, hon sen lecturer @uniofexeter
Stealth Belt Inc.
@stealthbelt
Stealth Belt Ostomy Support Belt is an innovative and stylish ostomy support belt made to hold your ostomy securely and discreetly in place.
Sahara Fleetwood-Beresford ๐ฑ Patient Advocate ๐ฉบ
@sahara88uk
#HealthAdvocacy; #IBD #Ostomy #MentalHealth #ChronicPain #Fibro. Healthcare Pt. Consultant. @IBDSuperHeroes ๐Pursuing calm ~ #Nature #Gardening #Plants #Yoga๐ง
Nigel H ๐ธ๐ธ๐ธ๐ธ๐ฅ
@crohnoid
My book - "Wrestling The Octopusโ is not about octopus wrestling. Free download from my website. ...and there's a podcast - tinyurl.com/yc7v28ru
Victoria Cuthill MSc RN ๐
@vickycuthill
Nurse Consultant & Lead Nurse @PolyposisRegUK & @StMarksGenomics |Previous @macmillancancer genomics clinical fellow | @StMarksHospital
Dean Judd
@deanjuddrn
NHS Matron for Ambulatory Care/Same Day Emergency Care at Chelsea and Westminster NHS, SJA Volunteer District Clinical Officer- South London and Youth Leader.
Vikki aka doubletroublestomagirl68
@vikkipalmer68
medical retired from the NHS Double ostomate urostomy colostomy patient advocate blogger passionate about raising urology awareness. All views are my own
Beyond the Diagnosis
@beyondthedx
Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
Ian Daniels FRCS
@bottomdoc
Consultant Colorectal & General Surgeon, Social Commentator, a bit of a fool and Yoda Lookalike!!! All views are entirely mine!
Nicholas Wright
@abobbyandrews
bci.qmul.ac.uk/staff/professoโฆ
@RawsthorneMat
@rawsthornemat
#MentalHealth Service User (&) Researcher #DataScience #PeerSupport #DigitalHealth #RFT #depression #ADHD bsky.app/profile/rawsthโฆ
Philip Wiles
@wilesphilip
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
Sivesh K Kamarajah
@sivesh93
@NIHRcommunity Doctoral Fellow @UoB_IAHR @NIHR_GSU ๐. General Surgery SpR. Collaborations ๐ค @gecko_study | @STARSurgUK ๐ฒ๐พโก๏ธ๐ฌ๐ง
@BEAUTIFULMUMSIE
@beautifulmumsie
Beautiful daughter Laura 31 died Colorectal Cancer Laura's blog paperdollybird.blogspot.com Assessor @JAG_Endoscopy Lecturer Grandma Goldendoodle Mum
BSGM
@britsocgenmed
The British Society for Genetic Medicine provides a forum for professionals involved in #genetics and #genomics as a clinical service and research.
Hannah Scott
@hannahm_scott20
Research assistant @QMUL | PhD candidate @CSI_KCL
Aneel Bhangu
@aneelbhangu
Professor of Global Surgery | Consultant Colorectal and General Surgeon | Researcher & Innovator
Gemma Chandratillake
@gemmachand
Genetics, genomics, genetic counsel(l)ing, generally waxing helical Work for @east_genomics and @Cambridge_Uni Vice-Chair @BritSocGenMed,Trustee @camraredisease
Dmitri Nepogodiev
@dnepo
NIHR Academic Clinical Lecturer @unibirmingham | Public Health | Surgical Epidemiology | Sustainability in Healthcare
Bill Newman
@geneticbill
Genomics and other matters...
European Society of Coloproctology
@escp_tweets
ESCP is dedicated to promoting and advancing the prevention, treatment, education and research into colorectal disease internationally.
JC
@jamesconlon_
Trevor Graham
@trevoragraham
Director, Centre for Evolution & Cancer @CEC_ICR @ICR_London Mixing maths, genomics & evolution. Early detection, metastasis & drug resistance. Bowel cancer.
Vaila Morrison
@vmid_uk
Vaila Morrison Inclusive Design. Passionate about access & sustainability. Parent advocate for #RareDisease #KAT6syndrome Trustee of @GSplayscape
ColostomyUK
@colostomyuk
Charity that SUPPORTS and EMPOWERS people living with a #stoma.Your voice on the bigger issues; campaigning, & running projects. #StomaAware @TeamColostomyUK
Lesly Jo Kujawa
@lesly_kujawa
Neuroscience / Rare Disease Consultant, Pharmaceutical and Biotechnology. Certified Yoga Instructor
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrarโฆ
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
SamebutDifferent
@sbdrareproject
Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
The Bottom Line IBD
@bottomlineibd
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
Daz Baalham
@dazb94
30, Gardener, Community Radio Presenter, passionate about local radio. Rare Chromosome and Fibromyalgia Individual.
Dr Ravindhi Murphy
@ravindhi
Lower GI medical oncologist and medical adviser at Centre for Drug Discovery, Cancer Research UK.
Xiaoxiao, PhD
@musicxiaoxiao
#Beatbox learner | Dir @dementia_radio |Amb @UKCISA | #Music #Dementia #Ageing #Wellbeing | #PerformanceScience| @DurhamAlumni |@LeedsAlumni | @LivUniAlumni
Cure Usher
@cureusher
Raising funds & awareness for Usher syndrome research. Secretariat for All Party Parliamentary Group. Registered charity, 1181293.
Michael Bahrami-Hessari
@mikebahrami
Microbiologist turned Community Engagement & Involvement professional in Global Health (๐ง๐ฏ ๐ฌ๐ญ ๐ฎ๐ณ ๐ฒ๐ฝ ๐ณ๐ฌ ๐ท๐ผ ๐ฟ๐ฆ ). All views own. He/him. ๐ต๐ญ ๐ฌ๐ง
@PPIEglobal #GlobalHealthDialogue #PPIE
@ppieglobal
Creator PidaRipley.com FRSA. Frm MacArthur Fellow; VR Fellow KCL; @CombatAmrOrg @AgeofthePhage @WAI_WomenAid @PidaRipley #WorldPhageWeek -see linked websites.
Rareminds
@raremindsuk
Specialised mental health and wellbeing services for the rare disease community. bit.ly/rarementalhealโฆ
Rare Disease Advisor
@raredisease_adv
Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
NF2 BioSolutions UK & Europe
@nf2biosolution1
Volunteer, patient led charity. Dedicated to NF2 Research. Raising awareness through advocacy, support & hope. Fundraising for new treatments or a cure to NF2.
HBA Support
@hba_support
Increasing awareness of hereditary brain aneurysms, campaigning for improved patient support and building research into the condition
SPIRE Network
@spireconcept
SPIRE-Severe neurological imPairment in IREland; examining prevalence, healthcare utilisation and parental experience. Supported by CHI Research & Innovation
Poetlaurieate
@poetlaurieate1
savesightnoweurope
@savesightnoweu
Science Collected
@sciencecollect1
Continued Education. Continued Conversation.
Natasha Barr
@caretently
Creating content with CARE for the rare disease community. Medical writing, translation and content creation services. Formerly worked at @vascern + @orphanet
Manchester Rare Conditions Centre
@mft_imrare
Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions
Canadian Autoinflammatory Network
@cdnanetwork
A Canadian not-for-profit dedicated to empowering autoinflammatory patients, families and researchers.
SIIL Ostomy ๐
@siilostomy
๐ SIIL Ostomy is more than just #ostomy clothing, it's a symbol of hope and empowerment for ostomates everywhere. #ostomypride #ostomyawareness
Care & Respond
@careandrespond
Create a health passport and engage friends & family support when most needed. Developed in partnership with the NHS.
Mental Health Research for Innovation Centre
@mentalhealthric
A partnership between Mersey Care NHS Foundation Trust and the University of Liverpool to improve future mental healthcare services and treatments.
FaitheMaugham
@30tvo9au3umx57z
McCeyte
@ceytemc5948
Ward
@toseshe74390
์์ฃผ ์๋ฆ๋ค์ด ๋๋ผ์์. ๋น์ ๋๋ผ์ ๋จ์๋ค์ ๋งค์ฐ ์ ์ฌ์ ์ ๋๋ค. ๋น์ ๊ณผ ์น๊ตฌํ๊ณ ์ถ์ด์ KAOAK.ID LiYY1225543 line.me/ti/p/7zgDEIiN0N
Paulette
@slouteen168228
Luna
@flora4174115018
Luna
@coralc3474
Luna
@melancholy20581
Luna
@etrichor72938
Luna
@wmsclmldy35781
Zrorqu
@zrorqu104455
Greg Findlay
@gregfindlaylab
Cell Signalling, Embryonic Stem Cell Biology & Developmental Disorders @mrcppu
Carrie Tierney Weir ๐๐
@carries_patter
Communicator. Haiku writer. Forest bather. Volunteer for Bowel Research UK charity.
Rebecca ๐
@resus2runner
My journey from cardiac arrest to sport๐โโ๏ธ๐ดโโ๏ธ๐โโ๏ธStoma โข bowel cancer. Once on Radio4 DNACPR โข ReSPECT โข EOLC โข Dignity in Dying. #TacklingTheStomaStigma๐
Team Colostomy UK
@teamcolostomyuk
PDRL and Wheelchair Rugby League from @ColostomyUK. ๐#TacklingTheStomaStigma to help create a more #StomaAware UK. #UpThePurps๐