The global awareness raising campaign for people living with rare diseases.
🌍 28 February 2026
Cloudflare is the world’s leading connectivity cloud, and we have our eyes set on an ambitious goal — to help build a better Internet.
✨ Tools for caregiving, built with compassion and conscience. We stand for LGBTQIA+ rights, health equity, racial equality, sustainability, and economic justice.✨
#Health #Healthcare #ElderCare #News
😷💉♥️📰
linktr.ee/ceceliacares
Rare Disease advocate in CT. Raising Awareness and advocating for Rare Diseases patients and caregivers.
🔗 https://rarectadvocate.com - Archive and Rare Disease Resources
You may be rare, but you're not alone!
#rareDisease #rareDiseaseAwareness
We use large-scale global incentive competitions to crowdsource solutions to the world's grand challenges.
The Journal of Physiology publishes original research in all areas of physiology and pathophysiology that illustrates new physiological principles or mechanisms.
📝 Wordsmith & Entertainment Enthusiast 📺 | Disabled but Unstoppable 💪
Links and $ accounts: beacons.ai/merrillbarr
Inspired by the classics, we're an indie Retro-Pop duo from Toronto!
http://musclesouls.com
🦋 Follow us!
We are 🇨🇦 🇺🇦 🇵🇱 🇹🇹
MG and WRX Enthusiasts
👩💻Farmacéutica. Comparto 💡todo lo que me parece interesante sobre salud🍏. #salud #bienestar #alimentacion
Representem 115 entitats de persones amb #discapacitatfísica i/o orgànica i defensem una societat inclusiva on puguem exercir els nostres #drets
Instituto de Investigación Sanitaria / Osasun Ikerketa Institutoa
Nou canal oficial de l’Ajuntament per a informar-te. Incidències a l’#APPValència, al ☎010 o al web d'Atenció Ciutadana 📩de http://valencia.es
Compte officiel
L'AFM-Téléthon est une association de malades et parents de malades
Retrouvez-nous sur https://www.afm-telethon.fr
📆 #Téléthon2025 : 5 & 6 déc.
Composer & lecturer • PhD student researching neurodivergence in composition and musical neuroqueering • Co-founder of the Neurodivergent Music Network • Kinetic (ADHD) Autistic, Neurodivergent, Disabled • she/they
https://linktr.ee/ncdanon
BUMBLEance is Ireland's Children's Ambulance Service. We are the difference that transforms a sick child’s journey. 🐝🚑
linktr.ee/bumbleance
Science Events helps you organise a scientific conference or workshop. Use our platform to organise your next event! Visit our platform at https://www.sci.events
International meeting on Laminopathies
21-23 May, Paris
More information: www.laminopathies.net
Co-Creating Ireland's Public Involvement in Open Research Roadmap
ENGAGED is building a national roadmap to shape public involvement in open research in Ireland. We believe that research can and does play an important role in tackling societal challenges.
Vidéos & balados sur l’innovation canadienne | Videos & podcasts on Canadian innovation 🇨🇦
youtube.com/@SavoirInnover
savoirinnover.ca
📣 The Whistleblower: juliecruse.com
📚 The Story: goodreads.com/juliecruse
🛍️ The Shop: amazon.com/author/juliecruse
🥞 The Stack: substack.com/@juliecruse
📊 The Data: academicabuse.com/data
🌐 The Hub: academicabuse.com
AuPS is the professional association for Australian physiologists, founded in 1960. Physiology is a key life science essential to our understanding of how humans and animals function. www.aups.org.au
#AuPS #Physiology
We are the Department of Translational Genomics of Maastricht University, a multidisciplinary team of (cell) biologists, chemists, geneticists, toxicologists and […]
🌉 bridged from https://social.edu.nl/@tgx_um on the fediverse by https://fed.brid.gy/
#ChildAdvocate #Teacher #Writer
College Graduate, Pets, believer in justice and compassion for all. #Resist #MuscularDystrophy #Inspire #Persevere #Create
Writer on history, foreign affairs, and technology.
Graduate student studying the geopolitics of the energy transition.
Consultant and licensed engineer supporting energy startups.
https://current-history.com/
buymeacoffee.com/currenthistory/
Leading CNRS and Université Paris-Saclay research center dedicated to the study of the brain.
Website: neuropsi.cnrs.fr
LinkedIn: linkedin.com/company/institut-des-neurosciences-paris-saclay/
Youtube: youtube.com/@NeuroPSI-saclay
Unpaid family carers have little recognition & support in low-& middle-income countries. We're changing that.
https://carersworldwide.org
Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
https://www.rarediseaseadvisor.com/
You can't cherry-pick human rights.
#MapleMeidas #BlueCrew
No DMs No Chat
I'm a full-time powerchair user, have Muscular Dystrophy, a mum and fiance, advocate for the disabled. I want to make a difference, in-between the tears, anger and frustration.
$SRPT #Duchenne #Elevidys #GeneTherapy data which STATnews, Fierce Biotech, BiopharmaDIVE, and BioCentury REFUSE to report! https://investorrelations.sarepta.com/news-releases/news-release-details/sarepta-therapeutics-announces-results-part-2-embark-study
Communications Officer - Research, Motor Neurone Disease Association
@mndassoc.bsky.social
@mndresearch.bsky.social
Specialist centre for clinical care & research in mitochondrial diseases, The National Hospital for Neurology. Co-leads Profs @RobPitceathly.bsky.social & Mike Hanna
ucl.ac.uk/centre-for-neuromuscular-diseases/patient-services/london-mitochondrial-centre
Research cluster working with @MRCHarwell.bsky.social as part of @MRCMouseNetwork.bsky.social studying mitochondria using #MouseModels
nmgn.mrc.ukri.org
Postdoctoral Research Associate in Muscle Proteomics at Liverpool John Moores University
We are the go-to agency for Facebook Challenge and Social Media Moderation for the third sector. We've supported household name charities to raise over £25 million through their campaigns, appeals and virtual challenges.
👉 https://www.socialaf.co.uk
Wheels around and wobbles a lot.
Telling it as it is, trying to survive the NHS as a disabled person.
The Institute of Developmental & Regenerative Medicine combines cardiovascular science, neuroscience and immunology to find new drugs and therapies.
Fighting for mental health – for support, for respect, for you ✊
User-led organisation, campaigning for choice, control & quality of life for adults with #MuscularDystrophy and related conditions. We offer peer support & info www.pathfindersalliance.org.uk
Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
🔗 https://www.worldduchenne.org/
Full Professor, Physical Activity, Exercise Physiology, Biomechanics, Aging, and Optimization of Neuromuscular Performance. Public University of Navarra (Spain)
MitoCAMB brings together a team of clinical researchers focused on mitochondrial and neurodegenerative disease translational research.
mitocamb.medschl.cam.ac.uk
(Photo: Florian Klimm)
Principal Clinical Biochemist CUH
Pregnancy Loss Research Group, INFANT, UCC
Gestational Trophoblastic Disease, Genomics
Genetiker og nesten bergenser, uten overtro. 🧬⚽️🍷📚🇳🇴
Working on rare diseases in the 🧬 clinic and lab, geneticist 🩺 PhD Haukeland hospital Bergen 🇳🇴
Genetics of Rare Neurological Diseases - currently a postdoc at the University of Miami through the Peripheral Nerve Society Laura Feltri Fellowship. Previously PhD @ University of Antwerp.
Scientists | Molecular biologist playing bioengineering to fight muscular dystrophies at IBEC 🦾🧬⚙️💊🏳️🌈
MD/PhD, Child Neurologist, Physician Scientist
Owned by the family dog, cold water dipper, #cargobikeemoji, n+1 bikes, #activetravel, pizza maker, point guard, RNLI crew, still hoping for strictly tickets, Aussie in North East UK.
Oligonucleotide development and translational science.
📌 Nucleic Acid Therapy Accelerator - NATA
Views on my own.
#PrideInSTEM 🏳️⚧️🏳️🌈 (He/Him)
Svetlana Gorokhova, M.D., Ph.D., is working in Marseille Medical Genetics (@univamu) and @aphm-chu-marseille in Marseille, France, remote member of NNDCS @NIH @NINDSnews
Medical professional with a passion for pediatric care | MBBCh 👩⚕️, Master's degree in Medical Genetics🧬 | Currently diving deep into clinical research at JWMDRC.
Mom, Physician &Researcher 😁
Networks Engineer, Data Scientist and PhD student at the John Walton Muscular Dystrophy Research Centre (JWMDRC). Using AI and MRI to expand our understanding of Neuromuscular Diseases.
Neuroscientist developing molecular therapies for neuromuscular and rare diseases 💪🫀🧠👁️🧪
@upvehu.bsky.social
@biogipuzkoa.bsky.social
ORCID: https://orcid.org/0000-0002-2409-8263
https://es.linkedin.com/in/ainara-vallejo-illarramendi-37441858
A community of University of Edinburgh researchers seeking genome knowledge for human, animal, plant and ecosystem health.
onehealthgenomics.ed.ac.uk
Professor at the University of Edinburgh
scientist | mutagenesis | genome biology | selection | cancer
Reader (Associate Professor) in Biomedical AI at University of Edinburgh |Quantitative Biomedicine #causalinference #ML #AI - views are my own
Disease genomics & molecular mechanisms; ME/cfs: http://decodeme.org.uk, SequenceME @ Edinburgh University. Views - my own. He/him.
Imperial College London
Human Genetics | Gestational Trophoblastic Disease | Placenta | Germ Cells
Scientist-clinician
(https://profiles.ucl.ac.uk/88423-harry-leitch)
Medical/Clinical/Human Geneticist with research focus on Reproduction/Infertility - Director of the Centre of Medical Genetics, University/University Hospital Münster - https://ukm.de/genetik & https://reprogenetik.de
Our mission is to improve the lives of people living with genetic disease and cancer through research.
Science Director of OpenTargets and Group Leader at Wellcome Sanger Institute
Genetics, immunology, drug discovery
Outdoors, cats, dogs and all animals
Views are my own
Deputy Vice President and Deputy Dean of Biology, Medicine and Health, University of Manchester. Views all my own
Director, Clinical Bioinformatics Software at Oxford Nanopore in the EPI2ME team. Interested in regulated application of Nanopore sequencing. Also bikes, beers, trains, and the American Office.
Hiring PhDs/Postdocs CGRLab.github.io | Incoming DDLS Assistant Professor, Data Science and AI division, Chalmers University | Pangenomics for studying genome variation and evolution | | Formerly at JHU-LangmeadLab, UNIL-DessimozLab, WUR
Genetics and Molecular Pathology Lab. Genetics and Genomics. Diagnostics, translation and basic science!
Lead data @HartwigMedicalFoundation, Amsterdam, Netherlands. Honorary fellow @OtagoUniversity. Active in the field of Bioinformatics and Genetics with a focus on human diseases. Lover of nature and (book) nerd. he/him
https://orcid.org/0000-0002-0348-419X
Wellcome PhD student @ Oxford 🧬
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
Chief Clinical Informatics @ BIDMC & Faculty Harvard Medical School, Chief of @DCINetwork.org #MedicalInformatics #AI #DigitalHealth #MobileHealth #LearningHealthSystems
https://www.LinkedIn.com/in/yuriquintana
http://www.yuriquintana.com
Human genetics, type 2 diabetes and obesity in today's environment. Cycling uphill. Team science. New shoots in Geneva & France, long roots in the UK & Exeter. https://www.unige.ch/medecine/gede/en/research-groups/timothy-frayling
Rare disease genomics 🧬 transcriptomics researcher from 🇳🇱 now in Maastricht after a great experience in Adelaide 🇦🇺
physician-scientist, author, editor
https://www.scripps.edu/faculty/topol/
Ground Truths https://erictopol.substack.com
SUPER AGERS https://www.simonandschuster.com/books/Super-Agers/Eric-Topol/9781668067666
Est. 1929, JAX is a nonprofit scientific research institute specializing in genetics, genomics, mouse, and cellular models of disease. www.jax.org
Associate Prof in health data science @HiLIFE_helsinki @FIMM_UH - MGH/Harvard - Playing with all kind of data - http://dsgelab.org
Computational biologist. Geriatric Millennial. Professor, University of Cambridge. Director of Data Sciences, Baker Heart & Diabetes Institute. British | Australian | American.
www.inouyelab.org | Cambridge, UK
Group Leader in Human Genetics, Wellcome Sanger Institute
Professor at the NYU School of Medicine (https://yanailab.org/). Co-founder and Director of the Night Science Institute (https://night-science.org/). Co-host of the 'Night Science Podcast' https://podcasts.apple.com/us/podcast/night-science/id1563415749
Scientific strategist | Storyteller | Genomics, Lab diagnostic and high throughput automation | Coder | Comments are my own | Omic.ly
Cardiovascular Geneticist / Bioinformatician 🇮🇪 BHF Immediate Research Fellow at Imperial College London, UK.
https://profiles.imperial.ac.uk/k.mcgurk
Postdoc in labs of @mwheelermd.bsky.social and @sbmontgom.bsky.social @Stanford - Exploring the 🧬 basis of rare diseases through multi-omic data integration 👨💻| ❤️ Computer Science best practices in biology | https://www.wiel.science
Initiative of young human geneticists in Germany.
Genetic counselors, clinical & basic researchers.
Views are our own.
Statistical geneticist. Professor of Human Genetics and Biostatistics at the University of Pittsburgh. Assiduously meticulous.
The Centre for Personalised Medicine (CPM) is a partnership between the University of Oxford’s Centre for Human Genetics and St Anne’s College. We provide a focus for multidisciplinary communication, engagement and research.
Researcher in statistical genetics, genetic epidemiology and precision medicine.
Bridging the whys and hows in psychiatric genetics.
With Prof Cathryn Lewis at SGDP Centre, @kingsioppn.bsky.social.
Via Virginia Inst for Psychiatric & Behav Genetics, VCU.
Professor of Human Genetics, interested in reproductive genomics, women’s health, menopause.
Professor @UGent I Rare eye & developmental diseases I IRD I Retina & RPE I Non-coding variation I Multiomics I Targets for treatment
debaerelab.com progret.eu
Public scientific institution, part of the Czech Academy of Sciences. Research in molecular, structure and cell biology, immunology, genomics and bioinformatics.
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
Life Science | Research Management
PhD student in the Ophthalmic Genetics group at IOB and University of Basel | Medical laboratory scientist
Postdoc at RadboudUMC. Likes bioinformatics, long reads and all kinds of genomic variants
