The Rare Disease Data Repository
https://TheRDDR.org
RDDR is an invaluable resource dedicated to the storage, organization, and dissemination of rare disease research datasets.
@katiejones.bsky.social
@researcherdevleeds.bsky.social
Researcher Development and Culture team in OD&PL @unileedsodpl.bsky.social at Uni of Leeds and home of the Research Culture Uncovered Podcast. researchersupport.leeds.ac.uk https://www.linkedin.com/company/researcher-development-and-culture-team-at-leeds
@alexpeden.bsky.social
Head of Research Cultures | University of Edinburgh Research | Culture | Policy | Views mine | she/her www.ed.ac.uk/research-innovation/research-cultures www.linkedin.com/in/alex-peden-93a913145/
@davidbryantlab.bsky.social
#CellPolarity lab using #3Dculture to study how cells collectively move in cancer. Professor, University of Glasgow. Senior Group Leader, @cruk-si.bsky.social. UKRI Future Leader Fellow.
@ijayas.bsky.social
Scientist (biophysics, single molecule imaging,🔬) | HoD of Molecular Medicine UNSW Sydney | she/her | 🏳️🌈🏳️⚧️ | proud Tangata Tiriti | mostly posting science, funding, equality&inclusion, and politics | posts reflect personal views only.
@shomarilw.bsky.social
Senior Manager, Research Culture & Communities @wellcometrust| Co-Founder @newfablesco | ExNeuroNerd | Likes: 🎮🎧🍿📺|🇯🇲🇺🇸🇬🇧| Own views | He/Him |🤙🏾🔥
@abinagui.bsky.social
DevBio in Val Wilson's Lab @edinuni-irr.bsky.social - Embryos, cell fate decisions and a soft spot for all things endothelial | Prev @geneticsub.bsky.social Postdoc rep @BSDB.bsky.social #SinCienciaNoHayFuturo #diversityinSTEM 🇺🇾🇪🇸 in 🏴
@mjafreeman.bsky.social
Cell Biologist. Membrane proteins, rhomboids, signalling, inflammation, cancer, unknome... Head, Dunn School of Pathology, @UniofOxford And other stuff
@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
@johannajoyce.bsky.social
Professor, University of Lausanne 🇨🇭 and Ludwig Institute for Cancer Research President-Elect, European Association for Cancer Research Mentor, Teacher, Advocate, Mum @joycelab.bsky.social
@simonecuff.bsky.social
Lover of all things data, immunology and viruses. Also a bit of sci-art.
@myelinlab.bsky.social
Lab at Albany Medical College, led by Sophie Belin and Yannick Poitelon. Sciencing therapeutic strategies for myelin disorders
@dr-cjdl.bsky.social
Postdoc neuroscientist studying molecular mechanisms of degeneration in the CNS and PNS. Passion for all glia, creating iPSC models, and fluorescent imaging 🧫🔬🧠 https://chelseyjleblang.owlstown.net
@wesstans.bsky.social
Clinical Laboratorian | Ph.D. in Neuroscience & Molecular Genetics @IUMedSchool 🧠 🧬 | ABMGG Laboratory Genetics and Genomics Postdoctoral Fellow @CUAnschutz
@aineurolab.bsky.social
Developmental neurobiologist at Dalhousie University. All things Nature, Cosmos, & Science. www.iulianellalab.com #neuroscience, #DevBio, #EvoDevo, #NeuroDev, #cytoskeleton 🧠 🧪 Opinions are mine. 🇨🇦
@sarahyl.bsky.social
Research Scientist interested in the intersection of disordered speech and disordered hearing. The Ohio State University. Personal + professional musings.
@glia-leadership.bsky.social
Stefanie Robel & Robert Roßbach helping research teams create low stress cultures. We love working with faculty on their systems to take the pain out of the job. https://glia-leadership.com
@psalmotoxin.bsky.social
👨🏻🔬& 👨🏻🏫🏳️🌈Neuroscientist in Cambridge UK interested in the neurobiology of pain and everything to do with naked mole-rats. 🏃🏻♂️, 📖 & 🤘
@jung-sillah.bsky.social
🧫Sculpting 3D landscapes for neuroblastoma @ChildrensPhila| @DanaFarber alum | PhD @Cambridge_Uni 🌈🥟🧬🧪🥼 https://www.piotrjung-sillah.com
@mfainzilber.bsky.social
Molecular neuroscience, cell biology, aikido and haiku, not necessarily in that order. https://www.weizmann.ac.il/Biomolecular_Sciences/Fainzilber/
@catcvicente.bsky.social
Science Strategy at the Dunn School, Public Engagement at Reuben College, both @Oxford Uni. Exec member of the UK Young Academy. Opinions here are my own.
@dervissalih1.bsky.social
Scientist studying molecular links between Alzheimer's, Ageing, microglia & diet @UCL @UKDRI @ARUKnews #Dementia Trained @BabrahamInst @Cambridge_uni @Stanford
@agarfinkel.bsky.social
Modeling and Dynamics of Biological Systems https://modelinginbiology.github.io https://en.wikipedia.org/wiki/Alan_Garfinkel https://profiles.ucla.edu/alan.garfinkel
@juliae.bsky.social
Neuroimmunology, oligodendrocyes, myelin, axons, cell biology, electron microscopy, University of Glasgow
@jacoates.bsky.social
Leading advocate for preprints, integrity, community & improved research culture | Host Preprints in Motion podcast | Immunologist | https://linktr.ee/jacoates
@gtalbert.bsky.social
Rare disease advocate and mom to a child with Homocystinuria due to severe MTHFR deficiency
@aledoneuro.bsky.social
Neurologist🧠 Epileptologist, director of Vithas Clinical Neuroscience Institute & Epilepsy Center - #FND - Neurogenetics🧬 angel.aledo@vithas.es
@cureeb.bsky.social
Raising funds for #EpidermolysisBullosa research and clinical trials. Please support us by joining our fundraising initiatives 🦋 Together we can #cureEB. https://www.cure-eb.org
@bbqcornnuts.bsky.social
GenX, rare disease, gun sense, chronic illness and pain, Democrat. The only thing that truly offends me is cruelty. Typos are a feature, not a bug . WV native. #raredisease #chronicillness #chronicpain #SchnitzlersSyndrome
@larubia22.bsky.social
💙💙💙Unapologetically Progressive Liberal 🔵, #Resist, Nature-loving, wild horse photography—I’m a retired educator & cancer survivor deeply troubled by the outcome of the 2024 election. Please no DM’s for dating or money. 💙💙💙
@dync1h1.bsky.social
Nonprofit 501(c)(3) patient advocacy organization working to find safe, effective treatments for individuals with DYNC1H1-Related Disorders
@oschwartz.bsky.social
Pediatric neurologist. Interests: neuromuscular medicine, pediatric neurocritical care & more. University Children's Hospital Muenster. Opinions are mine.
@maryoverfield.bsky.social
Rare disease advocate Long-suffering 7️⃣6️⃣ers fan Rochester, NY
@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.
@cathsmstratton.bsky.social
Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafoundation #KnowledgeTranslation #KnowledgeSynthesis #RareDisease #PainScience #Disability
@hcmefford.bsky.social
Physician scientist @ St. Jude (neuro)genetics | genomics epilepsy | rare disease | precision medicine
@gc4gc.bsky.social
rare disease neurogeneticist | epilepsy | epigenetics | iPSCs | mentor & genetics MedEd | here for the science, lab fun & occasionally my tiny hooman https://sites.northwestern.edu/carvilllab/
@anneotation.bsky.social
Clinical geneticist and rare disease researcher at the Broad Institute and Boston Children's Hospital
@biomilly.bsky.social
Neurogeneticist, Business Development Manager at CrestOptics and CEO of PurplexCell. Passionate about all things brain, access to education, patients advocacy and WomenInSTEM
@torierobinson.bsky.social
@EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | PPI Lead | #Epilepsy & #MentalHealth Research fiend | All views my own
@mydennis.bsky.social
Assoc Prof & Assoc Director of Genomics @UCDavis Genome Center. Neurogenetics, evolution/function of gene duplications, human, zebrafish. Posts my own. #firstgen #jogger (mee-gun) http://dennislab.org
@curesyngap1.bsky.social
SRF, est 2018, exists to improve the quality of life of SynGAP patients through the research and development.
@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
@ljmarksnyc.bsky.social
Rare disease advocate; nonprofit leader; tuberous sclerosis complex mom; SYNGAP1 sister. Committed to advancing human rights, trans rights, social justice, equity/belonging. Views mine
@thenotoriouseeg.bsky.social
Epileptologist/Head of Neurosciences @cookchildrens, I 💜 #HailState, buffalo wings, art, music & foremost Becky & my daughters. Views are mine, not my employer