NCL_RareDisease
@ncl_raredisease
@UniofNewcastle Centre of Excellence for Rare Disease works with @NewcastleHosps @NHIPartners & more, to constitute a 'Newcastle RD' community(Tweets V.Hedley)
ID: 1432710269294284800
https://www.ncl.ac.uk/rare-diseases/ 31-08-2021 15:24:55
194 Tweet
615 Followers
852 Following
Muscular Dystrophy UK
@mduk_news
We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
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
LifeArc
@lifearc1
Medical research non-profit transforming promising life science ideas into medical breakthroughs that change patients’ lives.
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.
@4130chromo.bsky.social
@4130chromo
Single-Cell Genomics 🧬 Spatial Transcriptomics 🧬 Next-Generation Sequencing 🧬 MTBing 🚵🏻♂️ Dad & Husband 👨👩👧👦 | ⚽🔴⚪ SAFC 🎫 | 🦋 own views.
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.
Newcastle University
@uniofnewcastle
Official page for Newcastle University UK, a founding member of the Russell Group of Research intensive universities, and a Global Top 130 university. #WeAreNCL
Vivienne Parry
@vivienneparry
British science & health writer, broadcaster, presenter, gardener, cake maker
CureCalpain3
@curecalpain3
C3 is a non-profit organization driving research to cure limb-girdle muscular dystrophy type 2A, also referred to as LGMD2A/R1 and Calpainopathy
AuroraWatch UK
@aurorawatchuk
Receive alerts when the #aurora may be visible from the UK. A service provided by Space Physicists at @LancasterUni For more information see our website
Dr. Amy Vincent (She/Her) [email protected]
@amyv91
Sir Henry Wellcome Postdoctoral Fellow @nuact_NCL fellow @mitomusclelab @mitoresearch and @jwmdrc. @UKYoungAcademy member and exec group. She/Her. Views my own.
UCL
@ucl
Sharing highlights of life at UCL (University College London), London’s leading multidisciplinary university. Follow @uclnews and @uclevents.
PIP-UK
@polandsyndromep
Poland Syndrome Charity facebook.com/pip.uk.org Poland Syndrome is a rare birth difference affecting hands and chest.
Sir John Burn
@capp3
Prof of Clinical Genetics Newcastle Uni. CI Capp3 – aspirin cancer prevent'n trial. Chair QuantuMDx Ltd Chair Newcastle Hospitals FT. tweets my own. He/him
Rare Diseases Ireland
@rarediseasesie
Equitable access to healthcare and opportunity for all! RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
Cambridge University Hospitals NHS
@cuh_nhs
We run the world-leading hospitals Addenbrooke’s and The Rosie. We’re unable to offer medical advice on our Twitter channel.
Charlotte Proud
@proudcharlotte1
Registered Nursing Degree Apprentice (3rd Year/Mental Health) @CNTWNHS @sunderlanduni Living with a rare disease, Osteogenesis Imperfecta.
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.
ENMC
@_enmc
Michal Malina⚕️
@drmalinam
Paediatrician & kidney doctor @GreatNorthCH & @NationalaHUS|Rare diseases researcher 🩺↔️🧬|#aHUS|🇨🇿in❤️🇬🇧|#DataScience|#SoMe @ipnajc|VP @scsd_uk|#Futurist
Helen Devine
@helendevine10
Clinical Academic @NUAcT_NCL 🔬 Neurology Consultant 🩺 Academic strand lead for MBBS @uniofnewcastle med school #MND #ALS #mitochondria #neuromuscular
Louise Degenhart
@loulou9782
I am a Girl's Brigade leader and carer for my Dad.
Carsten Finke
@carstenfinke
Cognitive Neuroscientist & Neurologist | Heisenberg Professor at Charité Berlin and Berlin School of Mind & Brain | Head of @BerlinCognition
Mary Lyon Centre at MRC Harwell
@mrcharwell
The UK’s national facility for mouse genetics and the use of mouse models for the pre-clinical study of human disease.
BSMB
@bsmb1
The British Society for Matrix Biology (BSMB), a popular and active society organising conferences and representing matrix scientists across the UK
Prof Michael Hanna
@mikehanna18
Neurologist National Hospital, Director UCL Queen Square Institute of Neurology, MDUK chair, mito, channels, committed to research for treatments
Mito Research
@mitoresearch
The latest news from the Wellcome Centre for Mitochondrial Research at Newcastle University. justgiving.com/campaign/mitoc…
Matthew S. Alexander
@matt_muscle_guy
Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
NCL Neuroscience
@neuroncl
Official Twitter handle of the Newcastle Centre for Transformative Neuroscience @NCL_medresearch @UniofNewcastle [email protected]
UCL Great Ormond Street Institute of Child Health
@uclchildhealth
@UCL Great Ormond Street Institute of Child Health: improving the health & well-being of children and the adults they'll become. YouTube: bit.ly/3FqKdCv
JWMDRC
@jwmdrc
John Walton Muscular Dystrophy Research Centre, Translational and Clinical Research Institute, Newcastle University #dmd #sma #lgmd #fshd #dm1 #gne #col6 #cnm
Rebecca Leary
@rebeccaleary3
Working mum of two gorgeous girls -total foodie. Loves to dance. Working on a European level to improve the clinical trial environment for children.
NIHR HRC Diagnostic & Tech Evaluation
@nihrtechevalhrc
We are part of @NIHRresearch and hosted by @NewcastleHosps in partnership with @UniofNewcastle
Lisa Alcock
@lisa_hummovsci
Senior Researcher @BAM_Research @UniofNewcastle || Gait Lead @ Clinical Ageing Research Unit @NIHR_Newc_CRF || #gait #falls #ageing #neurodegeneration
Kevin Marchbank
@marchbankkj3
Professor at Newcastle University
World Muscle Society
@worldmusclesoc
The WMS is a global, multidisciplinary community committed to advancing the science of neuromuscular disorders. Join us in Vienna for #WMS2025.
Lizzy O'Hare
@lizzy_o_h
🏑player, ⛷️ & into keeping fit. Interested in how data & technology can be used to change lives & give hope. Work for #IQVIA Views & passion are my own
Emily Clarke (she/her) 🧬🦮
@talkinggenes
Registered Genetic Counsellor @GenePeopleUK. working in the voluntary sector to support the Genetic community. @theAGNC EDI Sub-committee member.
Jen Campbell
@jencampbellkhan
Consultant Clinical Geneticist | Lead Clinician | Skeletal Genetics | Fetal Genomics | Own views
David Burn
@prof_davidburn
Pro-Vice Chancellor, Faculty of Medical Sciences, Newcastle University. Views are my own.
Faye McLeod
@fayemcloud9
Epilepsy Research Institute UK fellow at Newcastle University investigating synaptic connectivity in health and disease.
ERDERA
@erdera_org
The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
Neeraj Singh BJP Neta Raebareli
@neerajsinghbjp1
सौ साल जीने के बजाय जिंदगी में एक दिन ऐसा काम कर जाओ की लोग आपको सौ साल याद रखें
Association of Physicians, GB & Ireland
@aopgbi
Advancing #interdisciplinarymedicine since 1907. Open to all scientific researchers & practitioners.
Elisa Villalobos
@elisavillalob0s
Postdoctoral Research Associate at John Walton Muscular Dystrophy Centre @JWMDRC at Newcastle University. She/Her. 🇨🇱
Elizaveta Olkhova, PhD 🇺🇦
@lizasome
Neuroscientist at Prof Simon C. Johnson’s Lab, @NorthumbriaUni since 2024. 6 years @mitoresearch @UniofNewcastle #neurons #glia #mitochondria #immunity 🧠🔬🧫
Laura Alexandra Smith
@laurasmithncl
Research Associate at @MitoResearch @UniOfNewcastle funded by @GOSHCharity. Focus on mitochondria, epilepsy and neurodegeneration🧠
Horvath Lab
@horvathlab
The Horvath Lab is a research group at @Cambridge_Uni with a focus on mitochondrial diseases and inherited neuropathies.
Lauren Perry
@laurenperry80
#ColoradoNative☀️⛰️ | #RareDisease Advocate🦓 | #ISFJ✌️| #melomaniac 🎶 | #Xennial💾 | #SYNGAP1🧬 mom | Ops Mgr📃 at #SyngapResearchFund | @cureSYNGAP1💜💙💚
NIHR Newcastle CRF
@nihr_newc_crf
We are a @NIHRresearch Clinical Research Facility, providing expertise for the delivery of high-quality, experimental research and early phase clinical trials
Oxford-Harrington Rare Disease Centre
@ohraredisease
Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
SE-ATLAS
@se_atlas
Tweets rund um #SelteneErkrankungen und den se-atlas - Versorgungsatlas für Menschen mit Seltenen Erkrankungen. Red.: H. Storf @hstorf, J. Schäfer
Imogen Franklin
@imogenfranklin6
@DiMeN_DTP PhD student investigating the progression of mitochondrial disease 👩🏻🔬🧬 | @MitoResearch
Liv Eidsmo
@liveidsmo
Researcher, dermatologist. Opinions are my own.
XpanDH - HEurope project
@xpandh_project
To build individuals’ capacity to create, adapt & explore interoperable digital health solutions based on the European Electronic Health Record Exchange format.
CILIA-REN
@ciliaren
project-paladin
@eu_paladin
PaLaDIn is an ambitious Innovative Health Initiative (IHI) funded initiative, that will develop and implement an innovative data collection platform.
Rare Disease Research UK
@rdrukhub
We hope to be able to significantly impact the RD research landscape and improve the lives of those directly or indirectly affected by rare diseases.
Carmen Laplaza
@carmen_laplaza
Head of Unit of the #Health Innovations & Ecosystems unit @EUScienceInnov 🇪🇺
AnnemiekeAartsma-Rus
@oligogirl
Translating science from bench to bedside and from jargon to lay language
Robert Pitceathly
@robpitceathly
Professor of Clinical Neurology and Mitochondrial Medicine @UCLIoN | Lead @MRCMitoCluster | Co-lead @LondonMito
NIHR Newcastle BRC
@nihrnewcbrc
The NIHR Newcastle Biomedical Research Centre (BRC) works to transform lives through world-leading research in ageing and multiple long-term conditions (MLTC).
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]
Emma Woodward
@er_woodward
Clinical Geneticist. Tweets, re-tweets, likes are my own.
World Duchenne Organization
@worldduchenne
Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
UK Cilia Network
@ukcilianetwork
A supportive network for the cilia research community to share research and expertise. Account managed by Prof Martin Knight and ECR Advisory Group
Cambridge Clinical Mitochondrial Research Group
@cam_mito
MitoCAMB: a team of clinical researchers focused on mitochondrial & neurodegenerative disease research. bsky.app/profile/mitoca…
Neil Rajan
@derm_scientist
Professor of Dermatogenetics @UniofNewcastle & Consultant Dermatologist @NewcastleHosps #genetics #skincancer #raredisease Views are mine; he/him/his
Solve-RD
@solve_rd
Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.
TEDDY Network
@teddy_network
TEDDY Network is a scientific organization aimed at structuring efforts devoted to the development of medicines tailored for children.