Rare Disease Research Network_RDRN
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
@jwmdrc-registries.bsky.social
Our neuromuscular research databases offer patients the chance to securely share their data and stories to support and access research. https://linktr.ee/jwmdrcregistries #UK #NMD #DM1 #DM2 #FSHD #SMA #Col6 #FKRP #MTM #CNM #Myotonic #MuscularDystrophy
@dansutherland.bsky.social
Research fellow at the University of Warwick interested in the health and wellbeing of people with learning disabilities and their families
@coprocollective.bsky.social
We are a #co-production community where everyone is welcome! Together we learn, connect and champion co-production for lasting change. www.coproductioncollective.co.uk
@hearinglosslp.bsky.social
Major interests include patient and public involvement in health research, mainly but not only at Keele University. I have a hearing loss and teach paramedic students about it. Other interests include walking, badminton, tai chi and family history.
@somaticexp.bsky.social
Somatic Experiencing® International (SEI), a 501(c)(3) nonprofit, educates and trains professionals in SE™ to address trauma globally. We bring hope, awareness, and healing through training, outreach, and mobilizing support unresolved trauma globally.
@transformevidence.bsky.social
Global collaboration improving research about evidence production, mobilisation and use, and sharing lessons about what we already know
@linseigh.bsky.social
Storyteller. Disability Champion Award Winner @ The Black British Theatre Awards. Rare Revolution Magazine's Rare Under 30. Rep: Cowley, Knox, & Guy | Voice: SKT Talent.
@commonslibrary.bsky.social
Unofficial bot account posting whenever the House of Commons Library publishes new research and analysis.
@lucasnivon.bsky.social
CEO and co-founder at Cyrus Bio. Co-founder OpenFold AI bio consortium. Computational protein/biologic discovery. Rare disease, auto-immune, anti-viral, vax. PhD Harvard Biophys, Postdoc Bakerlab at UW. #Urbanism, #bikes, #democracy, #proteinai
@hcmefford.bsky.social
Physician scientist @ St. Jude (neuro)genetics | genomics epilepsy | rare disease | precision medicine
@teresamastracci.bsky.social
Associate Professor, Department of Biology @ Indiana University Indianapolis @iuibiology.bsky.social My lab focuses on diabetes & rare disease research. Science enthusiast. Proudly 🇨🇦
@srcamm.bsky.social
Just a dad of a disabled son, a deceased son and an amazing daughter with a rare disease. #DoBetter
@barbie4congress.bsky.social
Democratic candidate for Congress in Florida's 11th congressional district covering The Villages to Disney World Rare Disease Advocate and MLD Mom BarbieforCongress.com
@ginaravenscroft.bsky.social
Rare & neuromuscular disease researcher at UWA & the Harry Perkins Institute, Perth 🇦🇺 Passionate about #sciencefunding, #womeninSTEM, #EMCRs Mum of 👦👧🐶 Posting about genomics, rare disease, PI life & wine https://www.ravenscroftlab.com
@anneotation.bsky.social
Clinical geneticist and rare disease researcher at the Broad Institute and Boston Children's Hospital
@adangrenier.bsky.social
Patiente partenaire & communicatrice en maladies rares Patient partner & rare disease advocate #COVIDinformed 🦓 #COVIDisAirborne #LesVulnérablesComptentAussi *Follow doesn’t mean approval
@trish4democracy.bsky.social
Retired RN ER Trauma, 🚫Maga, former Republican no DMs Activist for abortion healthcare, Women, LGBTQ+, Indigenous people, Latino rights, Black rights, All people are equal. I have MDA5 Dermatomyositis, a rare autoimmune Disease for the past decade.
@jaredwhitlock.bsky.social
features editor @endpts.com / fall 2021 fellow @ksjatmit.bsky.social Writing (and editing) stories on rare disease medicine, diagnostics and China Reach out privately on Signal: jaredwhitlock.73
@avoidingpublic.bsky.social
Mom, wife, rare disease patient. Systemic Mastocytosis. Treading water till I find the right Dr.🦋🦓💙
@coffeeandresearch.bsky.social
Research Knowledge Broker, speaker, knowledge mobilization, cancer, childhood disability, rare disease, spoonie, coffee drinker. Opinions are my own.
@varshneylab.social
Assoc. Prof. Interested in CRISPR, Zebrafish, Disease Modeling, Rare Diseases, and Neurodevelopmental Disorders. The opinions expressed here are my own.
@mkell.bsky.social
OH Proud KC livin. Mother of Pups, Rare Disease Warrior/Advocate, Coffee Enthusiast, Avid Reader, Pelo & Dip 💅🏼
@lynnlaidlaw.bsky.social
Living with a rare rheumatic disease and MLTC’s Vocal about Co production and Public Patient Involvement. Peer researcher Interested and involved in Health research/ Policy Trustee @hsruk.bsky.social
@ctsa.bsky.social
Rare disease and cancer analysis models for sequencing data. Scientist at PacBio. Art school survivor. Views my own.
@alicemosberger.bsky.social
Assistant Professor, investigating how the brain generates skilled movements. (she/her) Public transport and bicycle enthusiast Views are my own
@doudna-lab.bsky.social
News from Jennifer Doudna's lab at UC Berkeley, Innovative Genomics Institute. Tweets from lab members and not Jennifer Doudna unless signed JD. Tweets represent personal views only. doudnalab.org
@rachelspicer.bsky.social
Recent PhD Graduate from Cardiff University, studying genetic modifiers of Huntington’s Disease 🧠 Postdoctoral Fellow at Vanderbilt Medical Center, studying Alzheimer’s Disease and Sepsis 🧬 Big Country Music Fan & Hockey Umpire 🏑
@dplamartin.bsky.social
Professor @hhu_de Mitochondrial Biology 🧬 | Institute of Biochemistry and Molecular Biology I | mitochondria, mtDNA and mitophagy http://bit.ly/bumb1
@mitoworld.bsky.social
www.MitoWorld.org is a global mitochondria research, information and media hub which intends to be inclusive across the many mitochondria communities to promote mitochondria broadly to the public, to medicine, health advocates and education.
@krkoehler.bsky.social
Neurobiologist and #organoid wrangler Associate Professor, #otolaryngology, #neurobiology @Bostonchildrens.bsky.social @Harvardmed.bsky.social Studying sensory #development through inner ear, skin and retinal organoids Lab: https://koehler-lab.org
@johnomason.bsky.social
Professor at University of Edinburgh using stem cells and organoids to understand human brain development and neurodevelopmental disorders including ASDs.
@whansi.bsky.social
Senior Researcher / Mitochondriac @meduniibk.bsky.social We develop and apply methods to study #mitochondria #genomes #mtdna #haplogroups #heteroplasmy in #cancer .e.g. #prostate or #ageing related diseases #ngs #longreads
@patricksward.bsky.social
Especially interested in metabolism, mitochondria and calcium. Postdoc w/ Vamsi Mootha and endocrinologist at MGH.
@russpoldrack.org
Professor at Stanford. Psychology/Neuroscience/Data Science. Books include: The New Mind Readers, Handbook of fMRI Data Analysis, Hard to Break, and Statistical Thinking. https://poldrack.github.io/
@medsci.ox.ac.uk
Oxford University's Medical Sciences Division is an internationally recognised centre of excellence for biomedical and clinical research and teaching, comprised of 16 core departments and the School of Medicine and Biomedical Sciences. www.medsci.ox.ac.uk
@oxford-cambridge.org
Alumni and friends of the two ancient Universities of #Oxford and #Cambridge based in Canada. Let us know about your #Oxbridge events and we'll help promote them! H/Q: @oxfordhouse.bsky.social #Oxonian #Cantabrigian #Oxon #Cantab #OxCam
@imm.ox.ac.uk
The MRC WIMM is a research institute at the University of Oxford with 5 core research areas: rare diseases, haematology, immunology and infection, stem cells and developmental biology and cancer biology. www.imm.ox.ac.uk
@ribomedicine.bsky.social
Research team of Tom Roberts at the University of Oxford, Department of Paediatrics, and Institute of Developmental and Regenerative Medicine. Our work focuses on RNA-based medicine and neuromuscular disorders. https://www.idrm.ox.ac.uk/research/neurology
@jojdavies.bsky.social
Group leader @ Oxford University. Interested in chromatin structure, gene regulation and genome editing
@eitoxford.bsky.social
Translating scientific discovery into real world impact 🌍 www.eit.org
@mitogc.bsky.social
Smithie 2014, mitochondrial disease, spoonie, rare disease, genetic counselor, 🏳️🌈 ♿️ opinions are my own
@flgenomics.bsky.social
Join us in uniting the Genomics community! Our goal is to deliver the benefits of genomics to patients faster.
@meberle.bsky.social
Head of CompBio at PacBio interested in rare disease, variant calling, population genetics and more
@rarediseasectn.bsky.social
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.
@oxfordbrc.bsky.social
The NIHR Oxford Biomedical Research Centre (BRC) is a collaboration between the University of Oxford and Oxford University Hospitals NHS Foundation Trust to fund medical research.
@ai.cam.ac.uk
ai@cam is Cambridge University's flagship mission to develop AI for the benefit of science, citizens, and society. 🔗 www.ai.cam.ac.uk
@kampmann.bsky.social
Professor at UCSF. Molecular/cellular mechanisms of brain disease. Functional Genomics. Diversity & Inclusion. 🏳️🌈 he/him
@rdndlab.bsky.social
RDND Lab at King’s College London led by Cristina Dias. Clinical Geneticist and Rare Disease researcher. Rare Conditions, neurodevelopmental disorders of chromatin regulation and chromatin remodeller-TF interactions. https://tinyurl.com/rdndkcl