Cambridge Rare Disease Network (CamRARE) @camraredisease
Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw linktr.ee/CamRARE Cambridge, UK Joined January 2015-
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📢The Rare Disease Research Network project aims to support the rare disease community in building an online network of partnerships & resources to facilitate patient-centered research. @CHCharityUK is proud to be on the working group rd-rn.org @camraredisease #RDRN
It has been such an inspiring and happy experience to contribute to this creative collaboration with hiddencreaturesart.com and @camraredisease - thanks @lifearc1
It has been such an inspiring and happy experience to contribute to this creative collaboration with hiddencreaturesart.com and @camraredisease - thanks @lifearc1
@EdelOToole @camraredisease @ISG_Charity @lifearc1 Well done Andy. First prize no less. I know we are biased (!!), but it really is so well deserved. Huge congrats. Including Lucy's wishes in her own writing on this art has additionally captured the lived experience of rare skin disease through the lens of a child. #ProudMama
Amazing day at the Translational Science Summit by @lifearc1 where I was one of the artists presenting a rare disease for @camraredisease, a collaboration with @PaulWicks My piece, Ruptūra, is an attempt to illustrate #ALS/#MND Thank you @garydaddart for dragging me into this
Six months work with @lifearc1 and @camraredisease culminating in twenty artists creating a beautiful exhibition translating science into art! So proud of everyone's work.
"I wish I’d heard about SWAN UK sooner" With advances in genomic medicine, you'd be forgiven for thinking that everyone gets a diagnosis, however that’s not the case! @SWAN_UK supports families of #undiagnosed children across the UK - spread the word! #undiagnosedChildrensDay
Join Pinpoint for their SEND Conference at Burgess Hall, St Ives 🗓️ 09:30 - 14:15 on 20 June 24 pinpoint-cambs.org.uk/event/pinpoint… Connect, learn & support SEND inclusion. Enjoy insightful talks, interactive workshops & a bustling marketplace. Come and say hello at our CamRARE stand!
Andy Dakin won the first artist's prize for Lucy's Wish which illustrates the visible difference and difficulties encountered through the eyes of a young girl with severe ichthyosis. Looking forward to @camraredisease in Nov. #raredisease #LATSS2024 @ISG_Charity @lifearc1
Do you or the person you care for living with a rare condition have blood tests? Do you go to a healthcare setting for these? @_beyondblood winners of our RAREsummit23 audience vote have created a home test & want to hear from you It takes 1 min forms.gle/pZyoZUJTbUohVu… Thanks!
LifeArc CEO Stephane Maikovsky announces launch of Rare Disease Translational Research Centres, including consortium Uni Birmingham, Belfast and Newcastle to speed up delivery of clinical trials @lifearc1 @unibirm_MDS @IcgsUob @GeneticAll_UK
@lifearc1 announced 4 translational research centres at Summit. Delighted to co-lead the LifeArc Centre for Acceleration of #RareDisease Trials & participate in LifeArc Centre for Rare Kidney Diseases. The future is bright for #RareDiseaseNI #RARDTAC @CPH_QUB #LATSS2024 #RDTAP
There's only 1 week to go until #undiagnosedChildrensDay2024 People in the SWAN UK community often tell us that they wish they’d found SWAN UK sooner. Please help to get the message out to more families that haven't yet found our support. #undiagnosed #undiagnosedChildrensDay
NEW series - Decoding Diagnostics! This series will provide clarity and guidance to individuals and communities within the rare disease space. 👉 Part 1: Exploring the world of genetic testing 👉Part 2: Navigating a genetic diagnosis Find out more: ow.ly/v4EH50R4iYx
Cambridge Uni's Rare Disease Society & Genomic Medicine Society are co-hosting: "Galactic Genomes - Exploring the Universe of Rare Diseases" 🗓️ 9:30 - 4 May 24 Hear from researchers, patients & organisations inc. CamRARE trustee Dr Sarah Leiter. Tickets: eventbrite.ie/e/871804329217…
We're delighted to share the fantastic news that our CRUK Cambridge Centre has been awarded £9.2m to train doctors and medical students to be the clinical cancer research leaders of the future.
We're delighted to share the fantastic news that our CRUK Cambridge Centre has been awarded £9.2m to train doctors and medical students to be the clinical cancer research leaders of the future.
⏰ Hurry! #PING2024 tickets are going fast! 🎫 Secure your spot now. 📢 Don't miss out on the chance to engage with top-tier speakers as they explore the dynamic landscape of AI in Pharma - threat or opportunity? See some more of our speakers for the event below.
Thank you Prof Lucy Chappell for highlighting our @NIHRcommunity funded project to build a patient led Rare Disease Research Network platform - “a community led approach to rare disease research’ at the @RDRUKHub conference today with @plrh_cambridge
Great to see lots of familiar faces at the first annual meeting of @RDRUKHub in Newcastle today. @NIHR & @mrc funded to connect and enhance the UK’s strengths in #RareDisease research. As David Jones said “the UK is really good at Rare Disease Research.” #RDRUKCon
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K 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.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Genomics Education @genomicsedu
23K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
NHS Genomic Medicine .. @NHSgms
7K Followers 816 Following Information for and from the NHS Genomic Medicine Service 🧬 #Genomics. https://t.co/MizyyMpX02…
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Cambridge University .. @CUH_NHS
22K Followers 550 Following We run the world-leading hospitals Addenbrooke’s and The Rosie. We’re unable to offer medical advice on our Twitter channel.
Unique @Unique_charity
8K Followers 2K Following Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. https://t.co/GkIBlYg5c5
Rare Disease UK @rarediseaseuk
22K 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.
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
Genomics England @GenomicsEngland
30K Followers 2K Following We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
Torie Robinson 🇺�.. @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Matthias Rare @MatthiasRare
6 Followers 29 Following
The Lilly and Blair F.. @LillyandBlair
33 Followers 56 Following The Lilly and Blair Foundation is dedicated to creating a better future for our girls and others afflicted with de novo Hereditary Spastic Paraplegia SPG4.
UrsulaSherwood @vtJ9xNn10Mzw4o
10 Followers 248 Following
LouiseBeerbohm @TlthY5m0RoL5M8t
9 Followers 251 Following
Glycocast @Glycocast
19 Followers 92 Following A podcast/journey of families, sugars and rare disorders. Follow us at: https://t.co/AqY934HKa0
Camila Downey @camiladowney
12 Followers 596 Following
aly100034 @aly100034
0 Followers 86 Following
LadyMoonShine🌊 @kisskissananda
141 Followers 972 Following 🤍AlienCupcake 🤍 Hearts, Stars & Flying Machines ⚔️All of my love 🤍
Melissa Bowerman @BowermanNMD
2K Followers 2K Following Senior Lecturer in Neuromuscular & Skeletal Disorders, Keele University. I research pathologies and new treatments in rare genetic disorders. Opinions my own.
Mohamed Wafik @mo__wafik
35 Followers 526 Following 🧬 Clinical Geneticist in London | Paediatric focus | Innovating patient care through genomics | Views are my own 🇬🇧 🇪🇬🔬
Steamed Bun Invasion .. @BaoZiInvasion
1K Followers 5K Following Neuroscience Masters student. I am disabled by Autism
Mike Willis @histon_mike
478 Followers 870 Following Ex ink-jet industry professional. Retired, but active in PPI - Public & Patient Involvement - especially related to T2 diabetes. Diagnosed with MND
Edel O'Toole @EdelOToole
2K Followers 2K Following Clinical academic dermatologist, interested in rare and common genetic skin diseases. Co-director of @HARPClinicalPhD #Blizard #QMUL #RoyalLondonHospital
David Hughes @dchughes62
1K Followers 2K Following Molecular/Evolutionary Geneticist.https://t.co/GYP4q4WwQ8 Tallis to NIN-Metal Machine Music is music Diogenes was right, views own
Goldenhar UK @GoldenharUK
221 Followers 380 Following Goldenhar Charity (UK) supports people of all ages throughout the UK who are affected by Goldenhar Syndrome and other craniofacial differences .
Timothy Barrett @Tim_Barrett2
487 Followers 345 Following Professor of paediatrics, University of Birmingham
Elsie Megan @poemsandparents
20 Followers 224 Following My cathartic and honest (poetic) ramblings about the ups and downs of parenting a child with severe learning disabilities.
Jon @JonU235
972 Followers 2K Following $SRPT #Duchenne #RareDisease Understanding the #Elevidys #GeneTherapy EMBARK study results: https://t.co/iAPXb7asDB
Jamie @jamie_wilson0
1 Followers 10 Following
Χαράλαμπος .. @babbism
375 Followers 3K Following endocrinologist-Diabetologist, #athensmedicalcenter loves playing chess , serving the art of photography @ #instantane , Hemophilia pt
HiTech Health @HealthHitech
133 Followers 390 Following Enabling healthcare companies to launch and supply products.
Brian Ferguson @viropractor
4K Followers 5K Following We research innate immune sensing of viruses, immune evasion and vaccinology. Associate professor of immunology. Cambridge BSI representative @BSICambridge.
sean angelique @jnaoeioelaws
2 Followers 84 Following
Udinahmad @udinahmadaja
1 Followers 68 Following
elisabeth robinson @nowDrRob
720 Followers 3K Following doctor, big fan of neutrophils and infection research 🩺🔬🦠🧪🧫🩹🏉🦀
Blood MedEd @bloodmeded
211 Followers 861 Following Here for sharing information & bringing awareness to 🩸 disorders &🩸diseases. RTs ≠ endorsements. Help us grow, follow us! #hemophilia #cancer #scd #dvt
༄✿Sana Queen♛�.. @SanaQueen_PTI
1K Followers 1K Following
Maryam Shoai @MaryamShoai
254 Followers 624 Following Senior Research Fellow @UCLIoN, #statisticalgenetics, #neurodegenerativediseases. Advocate for equal educational opportunities. Ex #UMIST
Grace Gregory @GraceGregory_
213 Followers 173 Following NF2 BioSolutions PhD student • Investigating the tumour microenvironment of vestibular schwannoma and meningioma.
İLIMLIHAÇI @ilimlihaci15286
22 Followers 61 Following
Nifty Profit @NiftyProfit
157 Followers 1K Following Macro Economics | Tech | Web 3 | Crypto Trader | Tokenomics Expert | Stoic
Focus On Sickle Cell .. @UgandaSickle
249 Followers 1K Following FOSCA exists to provide a multi-faceted approach to combating SCD that includes testing, research, raising awareness, and providing psychosocial support.
EoE-SDE @EoE_SDE
16 Followers 133 Following East of England Secure Data Environment: Elevating Healthcare Research Safely. We focus on improving Health Outcomes: Prevent, Predict, Involve, Personalize.
SHIB ARMY @ShibaArmy2020
109K Followers 37K Following Crypto currency trading and business expert . #DM for Promotion. $memes token #BSC #BSCgem #ERCgem #MetaVerse #NFT promoter #BSC #DYOR
Rithana Srikanth @RithanaS84780
11 Followers 128 Following Making patient voices a priority for researchers. @Leapcure https://t.co/AEUdNjKbBu
ClinRheumatol @ClinRheumatol
7K Followers 3K Following Clinical Rheumatology - Journal of the International League of Associations for Rheumatology 2022 Impact Factor: 3.4 Editor-in-Chief: Prof. Adewale Adebajo
Contact @contactfamilies
35K Followers 7K Following We are Contact, the charity for families with disabled children. We support families, bring families together and help families take action for others.
Member Manager Plus @MembManagerPlus
3K Followers 5K Following Can we help your club, charity or group? Join our free Facebook group to help/support each other, connect and share ideas! Tweets by Simon @LibraryPlayer
İBG @ibgmerkezi
10 Followers 68 Following Izmir Biomedicine and Genome Center İzmir Biyotıp ve Genom Merkezi
6224 @UrbaninLA
1 Followers 1K Following
Katie Waller @K_A_Waller
30 Followers 89 Following Patient Engagement and Advocacy Manager, The Lily Foundation. All views are my own.
The Lodge @GooseDown_2
96 Followers 3K Following Proverbs 1:7 KJV The fear of the Lord is the beginning of knowledge: but fools despise wisdom and instruction.
Thomas Hamilton @tehamilton211
40 Followers 476 Following
OneSizeFits1 @onesizefits1
28 Followers 29 Following Paediatric precision medicine research @BSMSMedSchool . Collaborating with @TheAlexBrighton . allergies/eczema/asthma . #childrensmedicine . #medicalresearch
Ramiro Maldonado @RamMaldonado32
1K Followers 2K Following @Dukeeyecenter Retina specialist. Ophthalmic Geneticist. Clinician-Scientist. #ophthalmicgenetics #genetherapy #electrophysiology #translationalresearch
Deborah Costa @deborahhcostamm
15 Followers 250 Following mãe do Davi, autista com alteração genética rara #CACNA1C
jamesjfink @jamesjfink
259 Followers 1K Following Girl Dad l Neuroscience l Drug Discovery l Synaptic Biology
Owoeye David @davoshalom
773 Followers 2K Following God Lover. Infection Prevention & Control Specialist. Sickle Cell Warrior & Advocate. Author. https://t.co/9z1lvAfJYh…
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K 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.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Genomics Education @genomicsedu
23K Followers 2K Following NHS England's Genomics Education Programme. Providing knowledge, skills and experience in #genomics #NHSgms #genomes100K #NHS #GenomicsConversation
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Taylor Kane @rarelikeher
3K Followers 1K Following Patient engagement consultant, #raredisease advocate, author, speaker, founder @remember_girls, and more!
NHS Genomic Medicine .. @NHSgms
7K Followers 816 Following Information for and from the NHS Genomic Medicine Service 🧬 #Genomics. https://t.co/MizyyMpX02…
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Ethan Perlstein @eperlste
17K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, solo vc @AngelList, evo pharmacologist, mTOR worshipper, HODLer since '14, cofounder of Kai & Luca, bio/acc
Cambridge University .. @CUH_NHS
22K Followers 550 Following We run the world-leading hospitals Addenbrooke’s and The Rosie. We’re unable to offer medical advice on our Twitter channel.
Unique @Unique_charity
8K Followers 2K Following Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. https://t.co/GkIBlYg5c5
Rare Disease UK @rarediseaseuk
22K 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.
yoni יוני @Primary_Immune
41K Followers 27K Following Human being. Jew. Israeli. Primary Immunodeficiency patient. הודו לה׳ כי טוב כי לעולם חסדו #Immunology #raredisease #ISRAEL
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
MA Art in Science @ArtinScienceMA
1K Followers 1K Following Bringing artists & scientists together @ljmuarts to explore collaborative approaches in art & science. #LiverpoolLASER @LASERtalks hosts. #sciart
Melissa Bowerman @BowermanNMD
2K Followers 2K Following Senior Lecturer in Neuromuscular & Skeletal Disorders, Keele University. I research pathologies and new treatments in rare genetic disorders. Opinions my own.
Mike Willis @histon_mike
478 Followers 870 Following Ex ink-jet industry professional. Retired, but active in PPI - Public & Patient Involvement - especially related to T2 diabetes. Diagnosed with MND
Barth Syndrome @BarthSyndrome
414 Followers 100 Following Barth Syndrome Foundation - saving lives through education, advances in treatments, and finding a cure for Barth syndrome.
Chad Michael Bouton @UnsytedRadio
2K Followers 5K Following Credited accessibility consultant for gaming, Founder & Owner of Unsyted LLC, disabled author, and host of The Unsyted Radio.
Lesly Jo Kujawa @lesly_kujawa
78 Followers 412 Following Neuroscience / Rare Disease Consultant, Pharmaceutical and Biotechnology. Certified Yoga Instructor
Will Davies @DrWillDavies77
670 Followers 1K Following Behavioural (epi)genetics (X and Y chromosomes); sex differences; steroid hormones; postpartum mood disorders; rare congenital skin conditions. Opinions my own.
ISG UK @ISG_Charity
726 Followers 447 Following The Ichthyosis Support Group (ISG) was formed in 1997 by a group of individuals affected by ichthyosis to create a network of parents, sufferers and medics.
Edel O'Toole @EdelOToole
2K Followers 2K Following Clinical academic dermatologist, interested in rare and common genetic skin diseases. Co-director of @HARPClinicalPhD #Blizard #QMUL #RoyalLondonHospital
Brian Ferguson @viropractor
4K Followers 5K Following We research innate immune sensing of viruses, immune evasion and vaccinology. Associate professor of immunology. Cambridge BSI representative @BSICambridge.
BSI Cambridge @BSICambridge
581 Followers 271 Following Official twitter account of Cambridge Regional Group of British Society for Immunology (BSI). https://t.co/I7wMNvSRzB
Focus On Sickle Cell .. @UgandaSickle
249 Followers 1K Following FOSCA exists to provide a multi-faceted approach to combating SCD that includes testing, research, raising awareness, and providing psychosocial support.
Çağdaş Canbolat @CagdasCanbolat
816 Followers 3K Following Accountant. Organiser. Day-Mer. SPOT. Evrensel. Patient Advocate for Galactosialidosis, Metabolic Disorder & GeneTherapy. Squash. PingPong. Football. Tottenham.
VWV @VWVLawFirm
2K Followers 437 Following VWV - a full service law firm and leading sector specialists. Our combination of expertise, teamwork and client commitment sets us apart.
Joseph Bateman @BatemanLab
931 Followers 647 Following Professor of Molecular Neuroscience at King's College London. Studying the molecular basis of neurological disease. All things mitochondria and mTOR.
Made WITH Patients @PFMDwithPatient
3K Followers 2K Following We partner WITH patients to develop new solutions and co-create methods for them to achieve their health goals. #MadeWithPatients #PatientEngagement
Miner Lab @miner_lab
2K Followers 3K Following The Miner lab @penn and @pennmedicine / @pennrheum is defining mechanisms & developing personalized medicines for rare rheumatic diseases @rvcl_research
Mark Kiel, MD, PhD @DrMarkKiel
191 Followers 252 Following Founder and Chief Scientific Officer @genomenon. #PrecisionMedicine #Biotech #Genetics Views are my own.
Matt Pelo @mattpelo
241 Followers 598 Following Founder @foregenomics, https://t.co/2Q7eKziJOL. Predisposition genetic test designed for children.
Nicky (She/Her) ♿�.. @NickySimpson98
5K Followers 4K Following I am a Trans Woman, an Adult Female Human Being. Living with Autism, Severe Asthma and Fibromyalgia; Full-Time Wheelchair User. Alt Account @NickySimp98.
Guide Dogs @guidedogs
154K Followers 996 Following Providing life-changing support, skills and dogs to people living with sight loss in the UK. General Enquiries: 0118 983 5555
NADSN @nadsn_uk
2K Followers 3K Following The National Association of Disabled Staff Networks (NADSN). A 'super-network' that connects disabled staff networks across the UK to share best practice.
Ilan Schwartz MD PhD @GermHunterMD
41K Followers 6K Following ID doctor & researcher @DukeAdultID, #TxID, #IDTwitter community builder; cofounder @idjclub; assoc editor @CIDjournal; BOD @msg_erc; he/him
Elle Cole (She/her) @Cleverlychangin
11K Followers 9K Following International best-selling (8X) author Speaker & advocate for #sicklecelldisease Producer & #CleverlyChangingPodcast Host 💌 [email protected]
Leila Amel @leila_suza25000
11 Followers 349 Following Clinical fellow. GP. Enjoying genomics life. Own views.
Margaret Graham McDon.. @MarrianeRiera
2K Followers 2K Following Patient Expert in Medicines: Research & Development @eupatients: @CSO_Scotland PEG: Diploma in Systems Practice: Diploma in Design & Innovation @openuniversity
The SUN Network @SUNnetworkCambs
1K Followers 2K Following We work alongside adults to get their voice heard & respected, & involve them in decisions in Mental health and Addiction services in Cambs & P'boro :)
Christian Bosselmann @cmbosselmann
319 Followers 381 Following Epilepsy Precision Medicine Research Fellow at @LalDennis lab, @ClevelandClinic | Previously: @HIHTuebingen & @PfeiferLab | ⚡🧠⚡
Dr Saghira Malik Shar.. @SaghiraMSharif
267 Followers 651 Following PhD, Principal Genetic Counsellor | Prenatal Genetics | Passionate for enhancing equality, diversity and inclusion in Genomics🧬
theredgc @theredgc1
1K Followers 735 Following I’m a genetic counsellor in Perth currently doing a PhD in the area of prenatal genetics. (views my own, she/her)
Dr Claire Jackson �.. @_Claire_Jackson
371 Followers 545 Following Mum, Mrs Myers, PhD, Primary Ciliary Dyskinesia (PCD) Scientist, Swimmer, Cyclist https://t.co/mmEiTtYWAU
Myrona Goutaki @mgoutaki
523 Followers 393 Following Paediatric respiratory epidemiology,Primary Ciliary Dyskinesia Also tweet as @beatpcd and as @PCD_ispm All tweets reflect my personal opinions only
Congenital Hyperinsul.. @CHIA_India
14 Followers 119 Following
Jack Collier @mitocollier
330 Followers 394 Following EMBO Postdoctoral Fellow | Mitochondrial signalling | @mitodynamics Lab | he/him 🏳️🌈
Int Society of Nephro.. @ISNkidneycare
26K Followers 473 Following International Society of Nephrology #ThisIsISN • World Congress of Nephrology: @ISNWCN • ISN Frontiers Meetings: #ISNFrontiers • Young Nephrologists: #ISNyoung
Kath Bainbridge @HKathBainbridge
15 Followers 64 Following Head of Rare Diseases and Emerging Therapies @dhscgovuk Views are my own.
Zoe Morrison @zoecullen92
369 Followers 235 Following RN MSc BN (Child Branch). Paeds nurse at Noah’s Ark Children’s Hospital for Wales. Views are my own.
ADEE España @adee_esp
229 Followers 697 Following 🧬 Asociación de referencia de personas con displasias esqueléticas en España 🫂Apoyamos a las personas con ADEE a lograr su plena inclusión 🤝 ¡Únete!
Arcensus @arcensus
146 Followers 57 Following Arcensus is an innovative start-up healthcare company dedicated to the early medical diagnosis of all genetic diseases and dispositions.
Haystack Project @HaystackProject
200 Followers 269 Following We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
strongerthancrps @strongrthancrps
234 Followers 493 Following Complex Regional Pain Syndrome Info & Support
Nuffield Department o.. @NDMOxford
9K Followers 701 Following The Nuffield Department of Medicine (NDM) at the @UniofOxford has a global reach and significant breadth in terms of capabilities and capacity.
Medical Sciences @OxfordMedSci
23K Followers 2K Following Latest research, news and events from the Medical Sciences Division. Tweets from the divisional office. [email protected]
NIHR Oxford Biomedica.. @OxfordBRC
8K Followers 1K Following Funded by @NIHRresearch, we are a partnership between @OUHospitals and the University of Oxford @Oxfordmedsci, supporting research that benefits NHS patients
Deaf News Today @DeafNewsToday
21K Followers 1 Following News for the Deaf and Hard of Hearing since 2001. More at https://t.co/9O9G7otwyy
Gonville & Caius Coll.. @CaiusCollegeCho
1K Followers 823 Following One of the UK's leading mixed collegiate choirs, specialising in undiscovered or unfamiliar repertoire | directed by @matthewm76 | [email protected]
Third Sector Network @MyThirdSector
2K Followers 2K Following We run online training workshops designed specifically for charities and non-profits (just like yours!)➡️ https://t.co/38ydOOmVbx
Ask Virgin Money @AskVirginMoney
10K Followers 90 Following Customer support from the team at @VirginMoney. We're here 8am - 8pm Monday to Friday, 8am – 4pm on Saturday and 10am – 3pm on Sunday if you need us.
Today was a day in which I was super grateful for the people I encountered just being nice. Can be really tough having a kid who has muscular dystrophy. Just ordinary kindness from people rather than agro (strangers who have no idea what I’m carrying) was so precious. #Kindness
Great discussions (and fun!) at @lifearc1's Translational Summit last week 🤩 @CathyJTS and Nicola McCarthy were delighted to present the ways the MTI encourages academic-industry partnership and research translation! milner.cam.ac.uk
@lifearc1 Thanks for including this in your conference. It’s been really wonderful to share our experience developing the #mitochondria artwork with the conference
Alongside great talks, we have a 'Translating Science Through Art' exhibition happening all day at #LATSS2024. Some of the UK's top artists and scientists joined forces to create pieces that highlight rare diseases and their impact.
📢The Rare Disease Research Network project aims to support the rare disease community in building an online network of partnerships & resources to facilitate patient-centered research. @CHCharityUK is proud to be on the working group rd-rn.org @camraredisease #RDRN
It has been such an inspiring and happy experience to contribute to this creative collaboration with hiddencreaturesart.com and @camraredisease - thanks @lifearc1
Alongside great talks, we have a 'Translating Science Through Art' exhibition happening all day at #LATSS2024. Some of the UK's top artists and scientists joined forces to create pieces that highlight rare diseases and their impact.
Amazing day at the Translational Science Summit by @lifearc1 where I was one of the artists presenting a rare disease for @camraredisease, a collaboration with @PaulWicks My piece, Ruptūra, is an attempt to illustrate #ALS/#MND Thank you @garydaddart for dragging me into this
Six months work with @lifearc1 and @camraredisease culminating in twenty artists creating a beautiful exhibition translating science into art! So proud of everyone's work.
@CelineMVidal @lifearc1 @camraredisease @PaulWicks You did great Celine!
@EdelOToole @camraredisease @ISG_Charity @lifearc1 What a brilliant interpretation 🥰 a truly remarkable little girl
Congratulations Andy Dakin, and thank you for raising awareness of the impact of #ichthyosis @camraredisease
Andy Dakin won the first artist's prize for Lucy's Wish which illustrates the visible difference and difficulties encountered through the eyes of a young girl with severe ichthyosis. Looking forward to @camraredisease in Nov. #raredisease #LATSS2024 @ISG_Charity @lifearc1
@EdelOToole @camraredisease @ISG_Charity @lifearc1 Well done Andy. First prize no less. I know we are biased (!!), but it really is so well deserved. Huge congrats. Including Lucy's wishes in her own writing on this art has additionally captured the lived experience of rare skin disease through the lens of a child. #ProudMama
Andy Dakin won the first artist's prize for Lucy's Wish which illustrates the visible difference and difficulties encountered through the eyes of a young girl with severe ichthyosis. Looking forward to @camraredisease in Nov. #raredisease #LATSS2024 @ISG_Charity @lifearc1
The Translational Science Summit has begun! Stay tuned for updates throughout the day and get involved using #LATSS2024.
#London calling - this time to see the #mitochondria for @lifearc1 and @camraredisease. Thanks to @LJMU_IHR for supporting this trip #artsci #scicomm
@lifearc1 announced 4 translational research centres at Summit. Delighted to co-lead the LifeArc Centre for Acceleration of #RareDisease Trials & participate in LifeArc Centre for Rare Kidney Diseases. The future is bright for #RareDiseaseNI #RARDTAC @CPH_QUB #LATSS2024 #RDTAP
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