KCNQ2 Cure Alliance
@kcnq2cure
Our promise is to educate and to advance research leading to treatments or a cure for patients living with the genetic disorder KCNQ2
ID: 2886474339
http://www.kcnq2cure.org 21-11-2014 04:14:30
523 Tweet
975 Followers
922 Following
Charlene Son Rigby
@charleneson
Data Geek. Rare Disease Advocate. Marketer. Mom. Not necessarily in that order. Committed to curing #STXBP1 At @RARE_X_ and @curestxbp1. Opinions are my own.
Rene Sugar
@renesugar
Stephen Hantus
@hantus
Neurologist/Epileptologist at the Cleveland Clinic Epilepsy Center. Director of the Continuous EEG and Epilepsy Consult Service. Tweets are my own.
Weizmann Institute
@weizmannscience
One of the world's top-ranking multidisciplinary research institutions. Noted for its wide-ranging exploration of the natural and exact sciences
Prof Ingrid Scheffer
@ingridscheffer
Laureate Professor of Paediatric Neurology at @unimelb, @theflorey, @austin_health, @RCHMelbourne. Research epilepsy, classn, genetics, speech & mentorship
orphanwriter
@orphanwriter
Senior Advisor, National Organization for Rare Disorders. Honored to work with amazing #raredisease patients, caregivers, researchers & clinicians.
Matthias De Wachter
@matjasdw
Neuropediatrician, epileptologist, PhD fellow in genetic epilepsies.
Ángel Aledo-Serrano
@aledoneuro
Neurologist🧠 Epileptologist, director of @Vithas @INeuroMadrid Institute & Epilepsy Center - #FND - Neurogenetics🧬 [email protected]
Mike Graglia 🌻
@jmgraglia
CEO @cureSYNGAP1 🧬 Pod SynGAP.Fund/10 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Stéphane Auvin
@stephane_auvin
Child Neurologist & Epileptologist. Professor at @univ_paris_cite. Dept Chair at @HopRobertDebre. Senior member 2021 @InstUnivFr. Deputy Editor @EpilepsiaJourn
GENEINFO
@lmihajlovi
Precise diagnosis Genetic testing Genetic counseling
Mark Versavel
@vzenium
Providing consulting services for drug development in neurology and psychiatry.
Ana Mingorance
@cnsdrughunter
🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
Paul Whiteley
@paulwhiteleyphd
Autism research. Ph.D. Blog: questioning-answers.blogspot.com 1/7th part-inventor of the 'plural autisms' (feel free to disagree with me).
Dr Imran Sheikh 🩺
@drimransheikh
MD MS FACP Neurosurgeon ICR researcher in Cancer Genomics. #KCL Alumni. #NHS reg Dr. CRUK cangene-canvaruk.org research lead. Currently relate with Erasmus MC
Ranjith kumar Manokaran
@doctranjith
Consultant Pediatric Neurologist and Epileptologist, Sri Ramachandra Medical Centre, Porur, Chennai, For appointments, WhatsApp +919013860064
American Epilepsy Society
@amepilepsysoc
We support research and education for professionals working towards a world without epilepsy. RTs ≠ endorsements. Also @amepilepsysoc.bsky.social.
International League Against Epilepsy
@ilaeweb
A preeminent association of healthcare professionals & scientists working toward a world where no person's life is limited by epilepsy. RTs are not endorsements
BarabanLab
@barabanlab
Translational epilepsy research in an academic setting | neuroscience, drug discovery, zebrafish, electrophysiology, cell therapy, precision medicine and more
Tracy Dixon-Salazar
@tracydixonsalaz
Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Yi Xing
@yixing77
Francis West Lewis Chair; Director, @CHOP_CCGM; Executive Director, @CHOPDBHi; Professor, @Penn. Bioinformatics, RNA Genomics, Human Genetics, Immuno-Oncology.
Massimo Mantegazza
@mantegazzamassi
Pathophysiology of neuronal excitability in epilepsy, migraine and neurodevelopmental diseases.
Columbia Pediatrics
@columbiapeds
Columbia Pediatrics is dedicated to providing healthcare services for children from birth through 18 years of age.
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Dennis Lal
@laldennis
Director of the Center for Neurogenetics; Associate Professor at UTH - Neurogenetics & Informatics - My opinions are my own & do not reflect my employer.
International SCN8A Alliance
@scn8aalliance
The International SCN8A Alliance is working collaboratively with families, clinicians and researchers to advance the understanding of and treatments for SCN8A.
FamilieSCN2A
@familiescn2a
Our vision is to find effective treatments and a cure for SCN2A disorders.
Reza Shervin Badv
@badvreza
Pediatric Neurologist and Epileptologist
Katja Kobow
@katjakobow
Epigenetics enthusiast. Working in molecular neuropathology 🧠🔬🧬 @UniFAU. Visiting scientist @UKL_Leipzig. Malformations and epilepsy. More than a scientist.
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Pablo Casillas-Espinosa MD, PhD
@pablocasillase1
Associate Professor. Future Leader Fellow @MonashNeurosci. #epilepsy #epileptogenesis #biomarkers #drugdevelopment. @yesILAE. Español/English 🇲🇽. Own Opinions
SynGAP Research Fund (SRF)
@curesyngap1
#SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 syngap.fund/F78A1 syngap.fund/10 🎙
Dr. Rajesh Khanna of the KhannaLabUF
@khannalabuf
Prof. of Pharmacology & Therapeutics, Univ. of Florida COM | Director, Center for Advanced Pain Therapeutics and Research (CAPTOR) |🇮🇳🇴🇲🇨🇦🇺🇸
Beacon Biosignals
@biosignals
neurobiomarker discovery and computational diagnostics for precision neurology & psychiatry 🧠 🌊🧬💻
Journal of Translational Genetics and Genomics
@ofgenomics
Official account of Journal of Translational Genetics and Genomics(JTGG, Online ISSN: 2578-5281). #journal #golden open access #continuous #innovative #interact
Andra Stratton
@livinlavidalopo
Co-Founder of Lipodystrophy United Program Associate for #RareAsOne @CZIScience. Always hungry. Sometimes funny. Opinions are my own.
CureGRIN
@curegrin
CureGRIN is a parent-run foundation committed to improving the lives of people living with GRI disorder. #RareAsOne #GRIdisorder #raredisease
David Lewis-Smith
@dlsneurocyclist
Dad & neurologist, semi-retired cyclist & musician, and student of the phenotypes & genetics of epilepsies aiming to improve outcomes for PWE.
Shanna Tolbert
@cacna1aireland
Mom to Ireland (CACNA1A 🧬 variant V1393M) and Brooke
CACNA1A Foundation
@cacna1a
Nonprofit dedicated to a brighter future for those with CACNA1A variants. On a mission to fund life changing research while supporting families along the way.
Rikke S. Møller
@filadelfiagene1
Professor of Epilepsy Genetics; Head of Department of Epilepsy Genetics and Personalized Medicine at @Filadelfia_dk & SDU. Tweets are my own.
Charissa Millevert
@c_millevert
MD, neurologist in training, PhD student at VIB-Uantwerp center for molecular neurology working on the genetics of epilepsy
Allan Bayat, associated professor
@allanbayat
Pediatrician/translational researcher #Epilepsy #Genetics #PrecisionMedicine #CerebralPalsy #RareDisorders #EpilepsyAwarenessMonth #DanishEpilepsyCenter
Kette Valente
@kettevalente
Full Professor in Pediatric Neurology University of São Paulo
CHOP Center for Computational and Genomic Medicine
@chop_ccgm
Center for Computational and Genomic Medicine at the Children's Hospital of Philadelphia (CHOP)
Vivian Liao
@vivian_wy_liao
Research Fellow at Ion Channel Drug Discovery Group Usyd Molecular pharmacologist & medicinal chemist
Jennifer Bain MD/PhD (she/her/ella/Dr.)
@bainbrainlab
Our Columbia University lab studies the genetics of neurodevelopmental disorders like autism and cerebral palsy. *My posts reflect my opinions, not CUIMC*
AGE Program - Adult Genetic Epilespy
@drdaniandrade
Professor of Neurology @UofT. Director, #AdultGeneticEpilepsy Program @UHN. Chair of @IlaeWeb #TransitionTaskForce #EpilepsyGenetics #neurotwitter
Climb Bio
@climbbio
We believe elevating relationships leads to more meaningful insights, better answers, and ultimately, to more inspired medicines for patients
Shawn Egan
@shawnegan14
Chief Scientific Officer of The FamilieSCN2A Foundation. Dad of a special needs SCN2A kiddo, working everyday to make her and the lives of those like her better
Gaetan Lesca
@gaetan_lesca
Medical geneticist (MD, PhD) interested in epilepsy and other neurodevelopmental disorders. University hospital of Lyon and Claude Bernard University Lyon 1.
Mary Chebib
@marychebib
Professor of Pharmaceutical Neuroscience and Head of School of Medical Science, Faculty of Medicine and Health, University of Sydney
Julia LeVan, MD
@excitedbrains
Child Neurologist/ Epilepsy Specialist/ Expert in child development/ Mom to two challenging boys/ book lover/ permanent learner!
Matteo Ruggiu, PhD 🇺🇦
@rnadoctor
Head of Laboratory of RNA Biology & Molecular Neuroscience @StJohnsU, New York, USA. Humanist, Spearfisherman & Freediver. Views my own. @RNAdoctor.bsky.social
CureKCNH1
@curekcnh1
Cure KCNH1 Foundation is dedicated to advancing the development of treatments for children with KCNH1 genetic disorders. CureKCNH1.org
Al George
@nupharm1
Ion channel biologist and pharmacologist; early adopter of automated patch clamp for studying channelopathies of the heart and brain
The KCNC1 Foundation
@kcnc1foundation
Supporting research to find a cure for all those impacted by KCNC1-related disorders. 501(c)(3) Operating under The Rare Village as our fiscal sponsor.
Sarah Drislane
@drislanesarah1
Mom | Pickelball fan | Foodie | Former SLP | Advocate for rare disease KCNT1 | Executive Director @KCNT1_Epilepsy_Foundation
Roberta Cilio
@roberta_cilio
Pediatric and Neonatal Epileptologist @ClinUnivStLuc Professor of Pediatric Neurology, @UCLouvain_be @EpiCARE_ERN
Neurelis
@neurelisinc
We are dedicated to innovating life-changing therapeutics that help people with neurological conditions gain greater control over their journeys. bit.ly/2JoRSVr
TESS Research Foundation
@tessresearch
We are a 501(c)(3) tax exempt public charity. Our goal is to fund cutting-edge research to find a cure for the genetic disease SLC13A5 Epilepsy.
Meriem Bensalem-Owen, MD, FAES, FANA, FACNS
@bensalem_owen
Professor of Neurology | Immediate Past President @ACNS_org | President @efkentuckiana BoD | Division Chief Epilepsy | Views mine #Kentucky #JiuJitsu #Tango
CheckRare
@checkrare
Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Jazz Pharmaceuticals
@jazzpharma
We’re a global biopharma company developing life-changing medicines for people with limited or no options. Please see our social guidelines - u.nu/cqmf
The Notorious EEG (M. Scott Perry MD)
@thenotoriouseeg
Epileptologist/Head of Neurosciences @cookchildrens, I 💜 #HailState, buffalo wings, art, music & foremost Becky & my daughters. Views are mine, not my employer
QurAlis
@quralisco
QurAlis Corporation is a private clinical-stage #biotech driving #Precision #Medicine breakthroughs for #ALS, #FTD, and other #neurodegenerative diseases.
yesILAE
@yesilae
The official account of the Young Epilepsy Section (YES) of the International League Against Epilepsy #yesILAE @IlaeWeb