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.
ID: 1750514749521993728
https://rd-research.org.uk 25-01-2024 13:43:41
149 Tweet
201 Followers
174 Following
Cystic Fibrosis Trust
@cftrust
We're dedicated to uniting for a #lifeunlimited for those living with #cysticfibrosis. Our social & Helpline teams monitor our accounts between 9-5 weekdays.
Biotechnology and Biological Sciences Research
@bbsrc
UKRI BBSRC invests in world-class bioscience research & training on behalf of the UK public. We are part of UK Research and Innovation (@UKRI_News).
Andrew Gwynne MP
@gwynnemp
MP for Gorton & Denton (Burnage, Levenshulme & Longsight) | Husband/Dad/Grandad | VIC20 user🕹👾
Prostate Cancer UK
@prostateuk
1 in 8 men will get prostate cancer. We fund research to save their lives. #ProstateCancerUK
The Crick
@thecrick
We are a biomedical discovery institute breaking down barriers between disciplines. A space where some of the world's most talented scientists pursue big ideas.
The Lily Foundation
@4lilyfoundation
The UK's leading charity fighting mitochondrial disease.We work to support patients & families,raise awareness & fund pioneering research towards finding a cure
Restricted Growth
@rgauk
We're passionate about changing society for the better, so people with #dwarfism can have the same opportunities as everyone else.
Appearance Research
@car_uwe
CAR: a centre of excellence in psychological & interdisciplinary research of appearance & body image
@chris_wigley
@chris_wigley
CEO Stealth HealthTech Co. Formerly: CEO at @GenomicsEngland; COO at @quantumblack; Partner @mckinsey; UK Foreign Service; @bbc. Views are personal.
Health Research Charities Ireland - HRCI
@hrcireland
National umbrella org supporting 45+ charities active in health, medical & social care research. Also run the Irish Health Research Forum. Charity No. 20052973
Dee Leyden
@delaye1969
Sadia Haqnawaz
@sadiahaqnawaz
PhD Student. Babyloss. Stillbirth. ARPKD. consanguinity genetic conditions. Muslim. British. Asian. Pakistani.
James Lind Alliance
@lindalliance
Bringing patients, carers, and health and care professionals together to identify and prioritise the unanswered questions they want health research to address.
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.
Dravet Syndrome UK
@dravetuk
We are dedicated to improving the lives of children and adults living with Dravet Syndrome, a rare epilepsy, through medical research, education and support.
Amanda Pichini
@amandapichini
Clinical Director @GenomicsEngland 🧬Genetic counsellor 🧬 proud Canadian 🍁 loves a good food market 🧺 own views
amy mctague
@a_mctague
childhood epilepsy clinician scientist Great Ormond Street UCL Institute of Child Health. All views my own
Amy Hunter
@hunterraregen
Action for XP
@actionforxp
Follow @ ActionforXP; improving lives of patients and families affected by the rare and incurable condition Xeroderma Pigmentosum (XP).
Rebecca Stewart
@rebeccatstewart
Co-Founder of @RareRevolutionM giving a voice to the rare community. @ActionforXP a patient support organisation for people living with Xeroderma Pigmentosum.
Michael Briggs 🔬🏏🎸🐝🦔🍺🌱
@md_briggs
Professor of Genetics @ Newcastle University | Rare Disease Researcher & ECM Biologist | Yorkshire Cricket & Psychedelic Rock | Find me on the Fells 😊
The Health Research Authority
@hra_latest
We’re no longer active on X. Head to hra.nhs.uk/updates to find out how to keep in touch.
Nuffield Department of Medicine
@ndmoxford
The Nuffield Department of Medicine (NDM) at the @UniofOxford has a global reach and significant breadth in terms of capabilities and capacity.
Tuberous Sclerosis Association
@uktsa
Support, research and advocacy for the Tuberous Sclerosis Complex (TSC) community. Social media community guidelines: bit.ly/3z4j7hz
The Research and Development Forum
@therdforum
The professional network for those managing, supporting & leading health & care research. You can also find us on LinkedIn and BlueSky bsky.app/profile/
Health Services Management Centre (HSMC)
@_hsmcentre
The official feed of the Health Services Management Centre (HSMC) undertaking research, evaluation and teaching within #health and #socialcare
Jillian Hastings Ward
@hastingsj123
'that mother' - #R4Today🎙Patient advocate, mum and wife. Genomics fan. Write a bit, talk a lot. MBE!
Kasia Pirog
@kasiapirog1
Geneticist, cartilage biologist, mountaineer. Senior Lecturer at Newcastle University. All views my own.
MRC Biostatistics Unit
@mrc_bsu
We develop, apply and promote innovative statistical and data science approaches to advance biomedical science and human health.
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
NIHR Cambridge Biomedical Research Centre
@cambridgebrc
An @NIHRresearch partnership between @CUH_NHS & @Cambridge_Uni. We research different diseases to find new treatments & medicines. Based at CUH & @CamBioCampus
Ring20UK
@ring20uk
Non-profit organisation supporting families, individuals and professionals who are affected by or who come into contact with Ring chromosome 20 syndrome - r(20)
Lynch Syndrome UK
@lynchsyndromeuk
Providing information and support for people with Lynch Syndrome. Raising public awareness of this genetic condition.
Naimah Callachand
@naimah_genomics
Head of Product Engagement and Growth @GenomicsEngland | Pharmacist
Kirsten Johnson, FRSA
@drkirstenj
Pianist, composer, FRSA, FISM, Chair of Fragile X International, Board member of EURORDIS, Chair of RDI's Council (she/her) linktr.ee/kjohnsonmusic
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Breaking Down Barriers
@barriersdown
BDB is a network of organisations working together to improve the lives of people from marginalised communities and addressing health inequalities.
Marie labus
@marie_labus
CEO of AMLo Biosciences, a biotechnology company developing innovative prognostic tests for melanoma and non-melanoma skin cancers to direct patient management.
@BartsHealthResearch
@bartshealthres1
We are the Research Engagement and Diffusion team, working with researchers and the public to support Public and Patient Involvement & Engagement in research.
Magdalena Skrybant
@mskrybant
Public Involvement Lead for @ARC_WM Passionate about all things to do with public involvement and engagement in health and social care. All views own.
RAiN
@rainallireland
All-Ireland Rare Disease Inter-Disciplinary Network. Working collaboratively to create a positive impact for individuals with Rare Diseases and their families.
Rare Disease Clinical Trial Network, Ireland
@rare_trial
HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.
Rare Disease Research Network (RDRN)
@the_rdrn
A new, inclusive, online hub facilitating patient-initiated #raredisease research. #NIHR funded, co-created by the rare disease community, #CamRARE & #PLRH.
Rareatives
@rareatives
Share Your Rare | Amplifying Rare Disease Voices 🎙️ 📖 Sharing stories from the 1 in 10 🧬 New patient-led publication #RareDisease #PatientVoicesMatter
NIHR BioResource
@nihrbioresource
National panel of 300,000+ volunteers, each consented to take part in experimental research and early phase clinical trials based on genotype and/or phenotype.
North East & Yorkshire Genomics
@neygenomics
Embedding genomics into routine clinical care, delivering faster and more accurate diagnoses, personalised treatment, and prevention.
Rare Autoinflammatory Conditions Community - UK®️
@racc_uk
A Registered Charity (1184846) for Patients and families affected by Autoinflammatory Conditions, in the UK. Members of @EURORDIS @_ERNRITA @NationalVoices
NHS Genomic Medicine Service
@nhsgms
Information for and from the NHS Genomic Medicine Service 🧬 #Genomics. england.nhs.uk/publication/ac…
GLADStudy
@gladstudy
Join us in the world’s largest study of #depression & #anxiety led by @psychgenomics @thaliaeley @KingsCollegeLon @NIHRBioResource Monitored 9am-5pm, Mon-Fri
Dr Amanda Stranks
@stranksa
PPI/E & Comms Lead, NIHR Cambridge BRC. Passionate about communication and public involvement in research! Lapsed antipodean. Views my own. She/her.