Carmen @carmenagustin.bsky.social Zurda. No excelente. Profesora y vicedecana de @biologiques-uv.bsky.social. Investigo sobre #SíndromeDeRett, y lo cuento en @naukas.bsky.social. Soy la madre de Laia. Cis, ella
Federico Castillo Álvarez @fedefedeson.bsky.social Padre/compañero en formación
Neurólogo, farmacéutico, dietista.
Imperfecto, inquieto.
Sueño, cefalea, t. funcional, microbiota, movilidad activa
#Urexperiencia
C. @ccantidubi.bsky.social
Cathy Abbott @cathyabbott.bsky.social Professor, eEF1A2/neurological disorders. Mostly talks about research, EDI (tries hard to be a good ally) but sometimes veers off into crafts and photos of Scotland. She/her, views own.
Gemma Carvill @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/
Clement Chow @clementychow.bsky.social henfluencer - geriatric millennial - #stopasianhate - don’t call me Clem - emotional eater™️- he/him- @chowlab
https://linktr.ee/clementchow
Christel Depienne @christeldepienne.bsky.social Molecular geneticist | Neurogenetics | repeat expansions | chromosome X | snRNAs | and more
The Notorious EEG (M. Scott Perry MD) @thenotoriouseeg.bsky.social Epileptologist/Head of Neurosciences @cookchildrens, I 💜 #HailState, buffalo wings, art, music & foremost Becky & my daughters. Views are mine, not my employer
KearneyLab @kearneylab.bsky.social Neuroscience | Genetics | Pharmacology | Epilepsy | Neurodevelopmental Disorders | Targeted therapeutics | Northwestern University, Chicago | Opinions are my own 🧪👩🔬🧠🧬💊
Coalition to Cure CHD2 @curechd2.bsky.social Patient advocacy group serving those affected by CHD2, a rare developmental & epileptic encephalopathy (DEE) associated w/Jeavons/EEM, photosensitive seizures, autism + intellectual disability. Accelerating research & supporting community www.curechd2.org
Karen S Wilcox, PhD (she/her) @karenswilcoxphd.bsky.social Neuroscientist studying epilepsy and looking for cures. LGBTQ ally. 🏳️🌈🏳️⚧️
Warning from George Orwell “The Party told you to reject the evidence of your eyes and ears. It was their final, most essential command.” No DMs. Also, I am proud to be woke.
Adam Feuerstein✡️ @adamfeuerstein.bsky.social Reporter at STAT. The Harry Kane of biotech. Dog ❤️er. Polk Award winner. Said one analyst: The likes of Adam Feuerstein attack viciously.
Dr. Michael von Forstner 🇪🇺🇨🇭 @epiguy.bsky.social Comments on pharmacoepidemiology/pharmacovigilance/drug development/(immuno)oncology/philosophy of science/hunting/fly-fishing/horses/dogs/falcons/mountains/skiing/wine/food/opera/literature - BlueSky Elder - Savage, Liberal, I/ENTP🇨🇭🇦🇹🇬🇧
Vanessa Merker, PhD @vlmerker.bsky.social Health services researcher at Massachusetts General Hospital passionate about #PatientEngagement in research, #RareDisease, and the working woman.
Kimberly Aldinger @kaaldinger.bsky.social
Syngap Research Fund @curesyngap1.bsky.social SRF, est 2018, exists to improve the quality of life of SynGAP patients through the research and development.
Jeff Calhoun @calhoujd.bsky.social Research Assistant Professor with Gemma Carvill (@CarvillLab on Twitter). Focus: epilepsy genetics. Twin. Ace cat dad. Occasional writer. I am only an egg. He/him.
Torie Robinson @torierobinson.bsky.social 🎬 Epilepsy Sparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | PPI Lead | #Epilepsy & #MentalHealth Research fiend | All views my own
Christina SanInocencio @csaninocencio.bsky.social Qualitative health communication researcher. Rare disease advocate.
Assistant Professor of Communication. LGS sibling. LI, NYC & CT
Cameron Metcalf @csmetcalf.bsky.social Scientist, epilepsy researcher, nature lover
Franck Polleux @franckp.bsky.social Neuroscientist and cell biologist. Investigator of the Zuckerman Mind Brain Behavior Institute (ZMBBI) in New York
The Rare Disease Data Repository @therddr.bsky.social https://TheRDDR.org
RDDR is an invaluable resource dedicated to the storage, organization, and dissemination of rare disease research datasets.
CRID - Unique Patient ID for rare disease clinical research @thecrid.bsky.social https://TheCRID.org
More data sharing, less data silos. CRID is a service that enables parents/patients create their own unique universal ID for clinical research.
Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx.bsky.social Clinical Research IT for Epilepsy & Rare Diseases
Natural Hx Studies, Patient Registries, Electronic Data Collection
Creator of The CRID and The RDDR
Web: https://clirinx.com
Matt Larouche @neurosearcher.bsky.social Neuroscience PhD. Interests in politics, health, genetics, poverty, and indigenous relations, among others. Treaty 6 territory. He/Him.
Marissa @anothermarissa.bsky.social #CDKL5 🧬 | Former school social worker turned stay-at-home medical mama | 🎙️Producer, content creator, & co-host of the CDKL5 in Color Podcast @cdkl5incolor.bsky.social
www.CDKL5inColor.com
Dan Lavery @djlavery.bsky.social Loulou Foundation, tackling CDKL5 Deficiency Disorder in collaboration with our amazing patient families.
Calan @calancdkl5.bsky.social Proud of the human I have become, proud Mum, Proud Wife, Proud Social Worker and Proud Patient Advocate and charity chair - CDKL5 UK BSc in Social Work and MSc in Global Health Policy
Pearson Lab @capearson.bsky.social Developmental Neurobiology | Autism | Epilepsy | Cortex | Neural stem cells | mouse | human
Assistant Professor Weill Cornell Medicine.
UCLA, University of Sheffield, University of Newcastle upon Tyne alum
capearsonlab.com
(Posts my own opinions)
Clem Bernard @clembrnrd.bsky.social Neurobiologist fascinated by brain development | University of Exeter | she/her
www.clembernardlab.com
Eva D'haene @eedhaene.bsky.social Nordic EMBL Postdoctoral Fellow @ Kilpinen lab, University of Helsinki | Chromatin dynamics, gene regulation, structural variation | neurodev, retina, space!
Lung Gene Therapy @cfgtedinburgh.bsky.social Retired Pulmonary Gene Therapist affiliated to the University of Edinburgh. Strategy Group member of UK Respiratory Gene Therapy Consortium. Opinions are mine but you may share them. https://www.respiratorygenetherapy.org.uk/meet-the-strategy-group
Dr. Aaron Nelson @pedsneuromd.nyc Posts ≠ advice ≠ endorsement.
Professor, husband, father, he/him/his.
NYC CNPD, MD, MBS, FAAP, FAAN, FCNS.
H+H Bellevue Hospital & NYU Langone Health.
@ https://pedsneuromd.nyc
Jean Christophe Poncer @poncerlab.bsky.social Neurobiologist, voluntarily exfiltrated from X.
Research Director, Inserm
Team leader, Paris Brain Institute
Co-Director, DIM C-BRAINS
Synapses, neurons and epilepsy.
Views are my own.
@ingohelbig.bsky.social @ingohelbig.bsky.social
German Landis @germanlandis.bsky.social God is present in the sweeping gestures, but the devil is in the details. Give everybody everything. I kind of suck at writing bios. Ban pit bulls and the pit bull lobby. #HamOnt
Frederic Schaper @fredschaper.bsky.social Instructor in Neurology, MD PhD | Neuroscientist at @braincircuits.bsky.social at Brigham and Women’s Hospital of MGB, Harvard Medical School | I’m Interested in neuromodulation, brain networks, and epilepsy
mk o’donnell @emmmkaay.bsky.social Mets, Giants, Rangers, family and a whiskey neat 💙 she/her, with a NeuroPace & few seizures here and there.
Laura Marks @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
Mark Bowren @markbowrenjr.bsky.social Neuroscientist & Clinical Neuropsychologist | Assistant Professor, University of Iowa Carver College of Medicine Departments of Psychiatry, Neurology, and Neurosurgery | Director, @iowablnl.bsky.social
https://bowren.lab.uiowa.edu/
Views are my own.
Jonathan C. Lau @jclauneuro.bsky.social Neurosurgeon. Anatomy • Informatics • Modulation • Surgery. AIMS Lab.🧠🎯
Collaborative Medicine. Collaborative Science. Multisport.🏊🚴🏃
https://jclauneurolab.io
Emily Bonkowski @esbonkowski.bsky.social Research Genetic Counselor (& Public Health Genetics PhD student)
Interests in neurogenetics, bioethics, and precision medicine for kids 🧬🧠💜
Science is real, views are mine (she/her)
Jillian McKee, MD, PhD @jillianmckee.bsky.social child neurologist | epilepsy neurogenetics | digital health | machine learning/AI enthusiast | physician mom | @ChildrensPhila 🇨🇦🇺🇸
Baikuntha @baikuntha.bsky.social Passionate Neurologist 🧠| Exploring the brain's intricate webs |Assistant Professor, Department of Neurology,All India Institute of Medical Sciences, Deoghar, Jharkhand, India
Heike Jord Knip @heike-jord-knip.bsky.social Business Owner, Disability and Neurodivergent Advocate and dad to a great young lady.
Albert Vilella, PhD. @albertvilella.bsky.social Bioinformatics Scientist / Next Generation Sequencing, Single Cell and Spatial Biology, Next Generation Proteomics, Liquid Biopsy, SynBio, AI/ML in biotech // http://albertvilella.substack.com
Mary Overfield @maryoverfield.bsky.social Rare disease advocate
Long-suffering 7️⃣6️⃣ers fan
Rochester, NY, summers in Saranac Lake
Wendy @wsiegs.bsky.social Just wanna be my most authentic self. Hydrate and rest. The phoenix burns so she can rise again. #slp #trauma #prek #pride #aac #lgbtq #womensrights #reproductiverights #disabilityadvocate #nj #njslp #autism #adhd #audhd #asl #earlyintervention #history
Sarah Vergult @svergult.bsky.social PI of the Functional Genomics lab (https://fungenlab-ugent.be/) at Ghent University.
Elucidating the genetics of neurodevelopmental disorders.
Special interest in the role of the non-coding genome during neurodevelopment.
Megan K @megkr.bsky.social Mom | Blue Dot | Book Lover | Crafter | End Epilepsy
Jai Carmichael, PhD @jaicarmichael.bsky.social PhD in Clinical Neuropsychology. Researcher focused on mental health 💚 after brain injury 🧠 | Practising Clinical Neuropsychology Registrar in inpatient and community psychiatry
https://scholar.google.com/citations?user=kpiDvjYAAAAJ&hl=en
Dr Kathleen Millen @neurodevkathy.bsky.social Tweets about dev biol, neurodev genetics, random cool science + life; usually with typos, so many typos
Ana Mingorance @cnsdrughunter.bsky.social 🧠 🧬 Neuroscientist. Looking for new medicines for #CDKL5, #SCN1A, #SHANK3, #DHPS and other neurological #RareDiseases with #epilepsy
JB Manent @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
Colin Dunkley @drcolindunkley.bsky.social #apaediatriclife reflections! | Children seen & heard...better outcomes | More baking | Consultant Paediatrician Sherwood Forest | Epilepsy12 Lead | BPNA course content Mx | Views own
Bluesky @bsky.app official Bluesky account (check username👆)
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