Rare Disease Research UK
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.
@rarevolution.bsky.social
Account for the BLACKSWAN Foundation and RE(ACT) Community #RAREvolution, stand up for research on #rarediseases blackswanfoundation.ch http://www.react-congress.org 🦓
@everylifeorg.bsky.social
We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
@jwmdrc.bsky.social
Performing world-class translational research to bring diagnosis, care and therapy to people with neuromuscular disease
@mdukcharity.bsky.social
We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
@rdexeter.bsky.social
Prof Emma Baple, Prof Andrew Crosby and team at @exeter.ac.uk defining the genomic and molecular basis of rare diseases https://wohproject.com/
@rarepatientvoice.bsky.social
Empowers patients and family caregivers to share their voices with researchers and companies developing products, devices, and treatments to improve lives.
@jameslindalliance.bsky.social
Bringing patients, carers, and health and care professionals together to identify and prioritise the unanswered questions they want health research to address. Visit our website: https://www.jla.nihr.ac.uk/
@jillianhw.bsky.social
'that mother' - #R4Today🎙 Patient advocate, mum and wife. Genomics fan. GRI genes. Rare disease life. Poet and photographer. MBE!
@pacbio.bsky.social
Our mission is to enable the promise of genomics to better human health by creating the world’s most advanced sequencing technologies.
@hrci.bsky.social
Health Research Charities Ireland (HRCI) is the national umbrella organisation of over 45 charities engaged in health, medical and social care research, collectively representing over 2 million people in Ireland. www.hrci.ie
@lynchsyndromeuk.bsky.social
Providing information and support for people with Lynch Syndrome. Raising awareness of this genetic condition.
@bioresourcencl.bsky.social
The NIHR BioResource is a panel of over 300,000 volunteers who have joined us to help understand the links between genes, environment, health and diseases: https://bioresource.nihr.ac.uk/ Contact our BioResource Centre: [email protected]
@tscnz.bsky.social
TSCNZ is run by a management committee of volunteers. Our objective is to ensure that our TSC community are informed, connected and supported. Find out more at TSC.org.nz
@therdforum.bsky.social
The professional network for those managing, supporting & leading health & care research.
@gladstudy.bsky.social
Join the world’s largest study on #anxiety and #depression today: gladstudy.org.uk
@cysticfibrosis.org.uk
We're dedicated to uniting for a life unlimited for those living with cystic fibrosis. Our social & Helpline teams monitor our accounts between 9-5 weekdays. cysticfibrosis.org.uk
@curedravet.bsky.social
The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families. https://dravetfoundation.org
@rd-rn.bsky.social
An online hub supporting patient driven research ideas to be realised & flourish. Open to all. Join the #RareDisease #Research revolution at www.rd-rn.org * connections * resources *mentoring NIHR funded, co-created by CamRARE, PLRH & patient experts
@oxfordharrington.bsky.social
Partnership of the University of Oxford and Harrington Discovery Institute. Combining expertise in discovery science and therapeutics development to accelerate cures for rare diseases. Visit us at: www.oxfordharrington.org
@rebecca-stewart.bsky.social
Co-Founder of RARE Revolution Magazine dedicated to elevating the voices of the #raredisease community and bringing together stakeholders from the field.
@loomoomahoo.bsky.social
CEO of Medics for Rare Disease. I want to see a world in which there is equitable healthcare for everyone. Trying to play my part in making this happen. Personal account. Views are my own. Trying not to burn out before #RareDiseaseDay
@uniquecharity.bsky.social
Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. http://rarechromo.org
@kasiapirog.bsky.social
Geneticist, cartilage biologist, mountaineer. Senior Lecturer at Newcastle University. All views my own. blogs.ncl.ac.uk/piroglab
@lilyfoundation.bsky.social
Fighting mito, finding hope Our vision is for a world in which every mitochondrial disease patient has a voice and access to treatment, support to improve their life and, ultimately, a cure. https://www.thelilyfoundation.org.uk/ #mitochondrialdisease
@prostatecanceruk.bsky.social