Oxford-Harrington Rare Disease Centre
@ohraredisease
Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
ID: 1351594667687768064
https://www.oxfordharrington.org/ 19-01-2021 18:17:40
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1,1K Followers
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AMRC
@amrc
The membership organisation of leading medical and health research charities in the UK. Tweets by our team.
Adam Clatworthy
@adamclat
Comms @googlecloud / Vice Chair for rare conditions @GenomicsEngland Participant Panel / rare disease dad 🧬 All views my own
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
andi roy
@andiroy
Clinician Scientist and Professor of Paediatric Haematology at University of Oxford. Developmental haematopoiesis and leukaemia
Leila Whitworth
@leilawhitworth
Research strategy & funding @OxfordMedSci @UniofOxford. Tweets about science, research & HE policy. Governor @LarkrisePrimary. Mum of 3. Views are my own.
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Kidney Research UK
@kidney_research
We are the leading kidney research charity in the UK. Kidney disease ends here 💜 📸 Tag us in your photo 🤝Join in with #TeamKidney
University of Oxford
@uniofoxford
Welcome to our official account 👋 Follow for the latest news, research and updates about life at Oxford.
RareNewEngland
@rarenewengland
Rare New England's Mission is to bring together New England patients and families touched by rare and complex disorders. We build foundations for support, creat
Patrick McGuire
@patrickjmcguire
Volunteering and fundraising for @CR_UK. CRUK Ambassador of the Year. All views my own fundraise.cancerresearchuk.org/page/bridge-2-…
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Pompe Support Network
@pompeuk
Pompe Support Network is a UK organisation to bring together the Pompe disease community to improve physical and mental well-being for all.
Citeline
@citeline
Trusted partner of the top 50 global pharmaceutical companies and the top 10 CROs, providing timely intelligence and insight to make authoritative decisions.
Medical Sciences
@oxfordmedsci
Latest research, news and events from the Medical Sciences Division. We're also posting daily from bsky.app/profile/medsci….
Ethan Perlstein bio/acc
@eperlste
ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, ceo @endrarediseases, solo vc @AngelList, evo pharmacologist, mTOR worshipper, cofounder of K&L, $CURES
Hilary Martin
@hilsomartin
Group Leader in Human Genetics at the Wellcome Sanger Institute. College Research Associate at St John's College, Cambridge.
Charles Gersbach
@cgersbach
Professor of Biomedical Engineering at Duke University, Director of the Center for Advanced Genomic Technologies
Timothy Barrett
@tim_barrett2
Professor of paediatrics, University of Birmingham
Leslie Dan Faculty of Pharmacy
@uoftpharmacy
The Leslie Dan Faculty of Pharmacy at the University of Toronto is one of North America's leading pharmacy educators and a hub for innovation and discovery.
The Blackford Lab
@drandyblackford
We are interested in how DNA repair defects cause disease, including cancer. 🦋 andrewblackford.bsky.social
Becky Sansbury
@aftrtheshock
Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
UCL_QS_CNMD
@ucl_qs_cnmd
UCL Queen Square Centre for Neuromuscular Diseases
Dr. Louise Oni
@louise_oni
Clinical academic Paediatric Nephrologist with interest in renal inflammatory diseases. All comments are personal opinion.
Bowen LI
@bowenli_lab
Asst. Prof. @UofT | Canada Research Chair in RNA Vaccines & Therapeutics | GlaxoSmithKline Chair in Drug Delivery & Pharmaceutics
Dessi Veltcheva
@dessiveltch
@UniofOxford PhD and Writer/liaison for Japan team @nanopore #DataScience | #Bioinformatics | #Scicomm - Co-founder of @ChickenJClub
TJ McCorvie (@allostericstate on ☁️)
@allostericstate
Revealing the hidden world of shape shifting enzymes using Cryo-EM. Senior research associate at Newcastle University, UK.
Penn Medicine - Abramson Cancer Center
@penncancer
Penn Medicine - Abramson Cancer Center has proudly been an NCI-designated Comprehensive Cancer Center since 1973.
David Hipkiss
@davidhipkiss
Experienced Life Science Leader
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Jasmina Kapetanovic
@cehajicjasminac
PhD, FRCOphth #VRsurgeon #clinicianscientist Developing #bioengineering strategies for restoring vision #roboticsurgery @eyeMacLaren @UniofOxford @OxfordBRC
Lynch Syndrome UK
@lynchsyndromeuk
Providing information and support for people with Lynch Syndrome. Raising public awareness of this genetic condition.
OxfordGenomicsCentre
@oxfordgenomics
Supporting scientists with the latest genomics technologies and bioinformatic tools. Based in @humangeneticsox @uniofoxford. We do our own research too.
Alport UK
@alportuk
Alport UK is a patient-led organisation dedicated to empowering people living with Alport Syndrome to enjoy the best possible quality of life.
Segun Fatumo
@sfatumo
Professor and Chair of Genomic Diversity @QMUL ; Head, NCD Genomics at MRC/UVRI and LSHTM Uganda. Genomics | GWAS | Africa | Capacity Building | Global Health
Alice Davidson
@aliceedavidson
UKRI Future Leader Fellow #UKRIFLF Professor @UCLeye. Ophthalmic Genetics, Functional Genomics and Translational Research.
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
alistair pagnamenta
@alistairp2011
Human genetics researcher based at University of Exeter
Schofield Group
@schofieldoxford
News from Prof Christopher J. Schofield's Group. CJS is a Fellow of the Royal Society & Professor @OxfordChemistry
Torie Robinson 🇺🇦
@torierobinson10
@EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
dazzle4rare
@dazzle4rare
Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 linktr.ee/dazzle4rare
CRUK Cambridge Centre: Paediatric Cancer 🎗️
@crukcampaeds
Paediatric Cancer programme @CRUKCamCentre in Cambridge UK - a network of clinicians and researchers working to tackle childhood cancers.
NCBRS Worldwide Foundation - Nicolaides Baraitser
@ncbrsfoundation
Our aim is to help families by providing practical advice, annual conferences, raising awareness of #NCBRS and possibly help to fund any future research studies
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Fyodor Urnov
@urnovfyodor
Gene editor + Professor Molecular Therapeutics @berkeleyMCB + Director for Technology and Translation @igisci + @danahercorp Beacon for CRISPR Cures.
Dyne Therapeutics
@dyne_tx
Advancing life-transforming therapies for serious neuromuscular diseases. Community guidelines: bit.ly/3BYPnpK
CureDRPLA
@curedrpla
CureDRPLA is a foundation formed to research a treatment and/or cure for DRPLA. Please join our DRPLA community at RareConnect.org.
Adam Johnson - DadVocate
@rarediseasedad
Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Purespring
@purespringtx
Let's transform the treatment of kidney diseases. We tweet about our cool science, our #Purespringers and making a difference to patients.
Rare Disease Advisor
@raredisease_adv
Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Rarity Life
@raritylifemag
A new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.
MRC National Mouse Genetics Network
@mrcmousenetwork
Distributed challenge-led research clusters working with the Mary Lyon Centre at @MRCHarwell to accelerate understanding of human disease using #MouseModels
Tom Wright
@twright_genomex
🧬Clinical Genetics Resident (SpR-OOPR) | PhD Researcher @FBMH_UoM @mft_iMRare @ManchesterBRC #RareConditions #Genomics #MentalHealth |💗Husband/Dad/Son/Sib🎭🎨
Yuyang Chen
@quenchentin
PhD student - Computational Rare Disease Genomics group with @nickywhiffin, Big Data Institute, University of Oxford (rarediseasegenomics.org)
CAIPM Oxford
@ou_caipm
The Oxford team working on the KAU-Oxford Centre for Artificial Intelligence in Precision Medicine (CAIPM) @KAU_CAIPM @CmdOxford
Caroline Huxley
@carolinehuxley_
Leading the cancer research strategy @GOSHCharity to drive progress for children + young people Prev. @CR_UK & @ECMC_UK for 5 years
UK Platform for Nucleic Acid Therapies- UPNAT
@upnat_node
Creating a national network of experts/stakeholders to facilitate & promote the development of Nucleic Acid Therapies for patients with rare diseases in the UK
Canadian Rare Disease Network (CRDN)
@canadianrdn
Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Taylor Lab
@taylorlabncl
Investigating molecular mechanisms associated with mitochondrial disease and disorders of autophagy @mitoresearch @NewcastleUni @NewcastleHosps @NEYgenomics
REOLUT - Rare Disease Research UK
@reolut
Official Rare Disease UK REOLUT account. Improving lives of people with rare conditions of the lower urinary tract.
TESS Research Foundation
@tessresearch
We are a 501(c)(3) tax exempt public charity. Our goal is to fund cutting-edge research to find a cure for the genetic disease SLC13A5 Epilepsy.
Robert Pitceathly
@robpitceathly
Professor of Clinical Neurology and Mitochondrial Medicine @UCLIoN | Lead @MRCMitoCluster | Co-lead @LondonMito
Birmingham Health Partners
@bhpcomms
Birmingham's strategic health alliance: @unibirmingham, @AstonUniversity, @uhbtrust, @BWC_NHS, @bsmhft, @ROHNHSFT, @swbhnhs, @bhamcommunity & @HealthInnovWM
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Nicky Whiffin
@nickywhiffin
Associate Prof & Henry Dale Fellow @bdi_oxford @HumanGeneticsOx | Computational Rare Disease Genomics | Non-coding | @StAnnesCollege | @nickywhiffin.bsky.social
Oxford Drug Design
@oxdrugdes
A drug-discovery company focused on oncology
KIF1A.ORG
@kif1a
We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
The Festival of Genomics & Biodata
@fogenomics
The UK's largest Genomics event is coming to Boston MA on June 24 - 25th. The next Festival of Genomics & Biodata in London will be on 28th & 29th January 2026.
Neil Rajan
@derm_scientist
Professor of Dermatogenetics @UniofNewcastle & Consultant Dermatologist @NewcastleHosps #genetics #skincancer #raredisease Views are mine; he/him/his