Alltrna
Alltrna is the world’s first transfer RNA (tRNA) platform company, and we are unlocking the vast therapeutic potential within #tRNA biology. #StopCodonDisease
Learn more: https://www.alltrna.com/
@leftynorthof49.bsky.social
Torontonian — Eccentric MedComms wordsmith — Loves non sequiturs. He/him 🏳️🌈
@lyricalmedical.bsky.social
Medical writer by day ✍️ | Learning the piano one note at a time 🎶 | Cat's best friend 🐱 For more information, go to: www.lyricalmedical.com
@nmd4c.ca
Canadian network connecting clinicians, scientists, patients, and industry to improve neuromuscular disease outcomes. Funded through CIHR-IMHA and Muscular Dystrophy Canada Visit us at: https://neuromuscularnetwork.ca/
@krishgm.bsky.social
Channel 4 News, Unreported World, Ways to Change the World, The Fourcast, Class of 2023 on Strictly Also Chairman of Duchenne UK and trustee at Royal Botanic Gardens Kew
@bluewizardonwheels.bsky.social
Living with Duchenne Muscular Dystrophy and winning, #LOTRO lifer, Massive Tolkien geek - Eat. Sleep. Shill. Repeat. for #TheRingsofPower😉😉- 💍🧙♂️🔥⚔️🧝
@electricwill.co.uk
39 - Sheffield - Duchenne muscular dystrophy Proud Socialist🌹 linktr.ee/Electricwill
@worldduchenne.bsky.social
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/
@dessa-ireland.bsky.social
Disability rights are human rights! DESSA was established in 2001 as an independent, not-for-profit organisation committed to supporting the rights of disabled people and their families. RCN: 20057077
@gregor-research.bsky.social
The GREGoR Consortium (Genomics Research to Elucidate the Genetics of Rare diseases) seeks to develop and apply approaches to discover the cause of currently unexplained rare genetic disorders. https://gregorconsortium.org/
@courageousparentsnetwork.org
CPN is a nonprofit org established to help caregivers & others caring for children with serious medical conditions navigate the journey with support. https://courageousparentsnetwork.org/
@erneurogen.bsky.social
The European Reference Network for Rare Urogenital Diseases and Complex Conditions - https://eurogen-ern.eu/
@thezebraalliance.bsky.social
The Zebra Alliance represents a beacon of hope and solidarity for navigating the challenging waters of Ehlers Danlos Syndrome, Rare Diseases, and Chronic Illness 🦓💙 Community • Education • Resources • Advocacy & Allies https://linktr.ee/thezebraalliance
@rareireland.bsky.social
@erknet.bsky.social
ERKNet is devoted to improving the lives of patients with rare kidney diseases. https://www.erknet.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.
@daretoberare.bsky.social
Our mission: CURE THIS All sales from Dare to be Rare go directly to funding research for the cause you choose at checkout. To shop, learn more, or become a partner, check out daretoberare.org
@realised-ihi.bsky.social
Transforming Clinical Trials for Ultra-Rare Diseases. 🔗 https://realised-ihi.eu/
@pspassociation.bsky.social
Helping people living with Progressive Supranuclear Palsy & Corticobasal Degeneration to live the best life they can #TeamPSPA🧠 Sign-up to our Pathway to Progress Challenge here: https://www.pspassociation.org.uk/pathway-to-progress/
@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
@ghiaa.bsky.social
Our Vision: A world in which medical innovations are promptly available to all populations in need.
@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 🦓
@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.
@radiofreetom.bsky.social
Staff writer at The Atlantic. Cat guy, democracy defender. Actor for a day on Succession, Jeopardy champ. Atlantic Starter Pack: go.bsky.app/NVbMa2Y
@jakeyeston.bsky.social
Editor at Science Magazine, shepherding chemistry papers; views here are my own; he/him
@erinlschumaker.bsky.social
Health care reporter at POLITICO covering the National Institutes of Health Tips: [email protected] Signal: ErinSchumaker.01
@sarahkarlin-smith.bsky.social
Journalist covering intersection of pharma, health policy & politics for the Pink Sheet. On Signal at SarahKarlinSmith.34 KFF Health News’ ‘What The Health?’ panelist. Co-created Prescription PULSE at Politico. GWU alum, dabbled in SMPA adjunct-ness.
@rachellense.bsky.social
Science communicator, artist | She/They 🏳️🌈 | Views = mine Add me on Finch! 🐥 9Y176YFQTH 🛰️ NASA Sci Comm (science.nasa.gov) 🎨 The Science Writer Graphics Editor (thesciencewriter.org) 📃 Online Portfolio (rachellense.com)
@scientificdiscovery.dev
Science writer and chart maker. Researcher at Our World in Data. Co-founder of Works in Progress. Newsletter: https://scientificdiscovery.dev https://twitter.com/salonium 🏳️🌈
@emilymullin.bsky.social
Science writer @wired.com, covering health and biotech Contact me: [email protected] or emullin.06 on Signal
@maxbayer.bsky.social
Pharma reporter at Endpoints News | Past: Fierce Biotech and CBS News | [email protected] or chat me for Signal. he/him
@cenmag.bsky.social
https://cen.acs.org/ Sharing the world of #chemistry: News🗞 Research⚗️ Infographics #PeriodicGraphics ℹ Pictures #CENChemPics 📷 Comics #SketchChemistry 🗯 #FluorescenceFriday ❇️
@laurenctesta.bsky.social
PhD candidate and #raredisease patient-scientist in Gene Therapy and Vaccines at Penn. Interested in genetic therapies, aortas, and climbing. #BillsMafia
@cispt2.bsky.social
🇦🇺 all about treatments for rare diseases, drug discovery and technologies. Views my own. Etc.
@juanbonifacino.bsky.social
Cell biologist at NIH researching mechanisms of protein and organelle transport, and related diseases. Special interest in neurons and neurodevelopmental disorders. Passionate about science, nature, travel, and music. Views are my own.
@rarediseasemom.bsky.social
Lindsay. Democratic nominee for VA House of Delegates district 69 (I had to resign from running sadly due to unexpected health emergency) Super focused on my local community ( Hampton Roads ) and rare disease advocacy.
@rarediseasepatient.bsky.social
#RareDisease patient, missing life: Polymath, classical musician, linguist, UNI instructor, minister, metaphysicist, intuitive, naturalist, #vegan ARA
@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
@jbmanent.bsky.social
Developmental neurobiologist studying cortical malformations (grey matter heterotopia) and #epilepsy at INMED, INSERM in Marseille, France https://orcid.org/0000-0002-2436-8593
@cnsdrughunter.bsky.social
🧠 🧬 Neuroscientist. Looking for new medicines for #CDKL5, #SCN1A, #SHANK3, #DHPS and other neurological #RareDiseases with #epilepsy
@rarebydesign.bsky.social
Grassroots nonprofit creating awareness of inclusion, representation and living life positively for #PWD and #RareDiseases along with their families. Founded by @Kegottsleben.bsky.social.
@maryoverfield.bsky.social
Rare disease advocate Long-suffering 7️⃣6️⃣ers fan Rochester, NY
@csaninocencio.bsky.social
Qualitative health communication researcher with a focus on rare epilepsy. Assistant Professor of Communication. LGS sibling. Founder, LGS Foundation; Board, Coalition to Cure CHD2; Advisor, FamilieSCN2A; Chair, Rare Epilepsy Network. LI, NYC & CT
@djlavery.bsky.social
Loulou Foundation, tackling CDKL5 Deficiency Disorder in collaboration with our amazing patient families.
@stiles.io
Genetic, research, and software engineer looking to make friends. Creator of Poly, an open source Go package for engineering DNA 🧬 Let's engineer weird little guys together. github.com/bebop/poly 📍San Francisco
@dr-alphalyrae.bsky.social
AI for Life Sciences & Digital Health at NVIDIA | trained as a scientist from JGI, UW & UC Berkeley | views are all mine