The Cute Syndrome
@thecutesyndrome
The Cute Syndrome is a blog and 501(c)(3) foundation dedicated to funding research for and raising awareness of PCDH19 Epilepsy.
ID: 2923128880
http://www.thecutesyndrome.com 15-12-2014 15:59:11
720 Tweet
207 Followers
114 Following
TSC Alliance
@tscalliance
The TSC Alliance is a source of hope and support for people with tuberous sclerosis complex so they can live their fullest lives. #HopeNoMatterHowComplex
AngelmanSyndromeFdn
@angelman
Angelman Syndrome Foundation advances the awareness and treatment of Angelman Syndrome through education, information, research and support.
Epilepsy Foundation of Australia
@epilepsy_fdn
No one with epilepsy should go it alone. Visit our website for the latest research and training or to donate towards finding a cure.
National Organization for Rare Disorders (NORD)
@rarediseases
National Organization for Rare Disorders (#NORD) is the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay.
Paul Brandeis
@pbrandeis
Leslie
@twiggsy2194
caterina ancora
@caterina_ancora
Child Neurology & Psychiatry, tireless reader, cat lady and windsurf lover
Mike Graglia 🌻
@jmgraglia
CEO @cureSYNGAP1 🧬 Pod SynGAP.Fund/10 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Maddie Gillentine, PhD
@maddieag
Research Director @HNRNP_Family Former postdoc @uwgenome, PhD @bcmhouston, BA from @kcollege. #Neurodiversity #RareDisease
Charlie
@charlesasteward
Elena Gardella
@elegardella
Child Neurology Foundation
@child_neurology
A national non-profit working through advocacy, research and education to ensure optimal care for children living w/neurologic conditions #ChildNeurology
Pro Bono Omics
@probonoomics
A journey to assist with rare disease challenges offering nil cost advice using computational modeling targeting personalized medicine for those in need.
Rajaneesh K Gopinath
@rajaneesh_kg
Associate Scientific Director at @viscira / @VMLYR
Rare Patient Voice
@rarepatientvoic
We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
arturo gonzalez
@arturoglez65
Shanon Rego
@shanonrego
First Year Neuroscience PhD student @MayoClinic 🧠 🇮🇳 🇺🇸
Stacey Meyer Rabe
@staceykhmeyer1
Ian Wenker
@ianwenker
Gerry Nesbitt @ CLIRINX Clinical Research IT
@clirinx
Clinical Research IT 🇺🇸 🇨🇮 for Epilepsy & Rare Diseases I prefer BlueSky. Find me at: bsky.app/profile/clirin…
citizen.health
@citizenhealthx
We're building the AI-powered tools patients deserve. One place for all records + intelligent insights. Engineering healthcare's future. Join our mission.
Ploassoren
@ploassorengbxv
Late night and early morning, please live hard
Nitya Beriwal, MD
@doctor_nitya
Child Neurology PGY4 resident physician @UChicagoMed 💜👶🧠 | Passionate about epilepsy genetics and epilepsy surgery!⚡️🧬
Washington University Rare Diseases Care
@washurarecare
NORD Rare Disease Center of Excellence | We provide clinical diagnosis, care for those with rare diseases and are recognized as a leader in rare diseases.
The Scn2a Foundation
@scn2agene
Our mission is to drive & accelerate targeted therapies for SCN2A. Please consider donating to our cause: scn2afoundation.org/donate
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
Roland
@rollo1701
Bonnie Joyner
@bonniejoyn18538
Institut für Humangenetik 🧬 | Uniklinik Leipzig
@hug_leipzig
Das Institut bietet genetische Diagnostik & ambulante Beratungen an. Zudem erfolgt Forschung zu seltenen Erkrankungen & studentische Lehre am @UKL_Leipzig.
Escayg Lab
@escayglab
We use mouse models to study neurological disorders such as epilepsy, autism, and AD. We also work on disease gene discovery and treatment development.
the human anachronism™️
@fullasmuchheart
christine / christian, wife, writer / here to talk about the bible, homesteading, history, star wars, & writing my novel /✨moderately extra✨ about most things
CRID - Unique Patient ID/clinical research
@_thecrid
More data sharing, less data silos. I prefer BlueSky . Find me at: bsky.app/profile/thecri…
EpiCARE
@epicare_ern
European Reference Network for Rare and Complex Epilepsies. We are 50 specialist hospitals in 24 European countries with expertise in epilepsy & research.
Rare Epilepsy Network
@rareepilepsy
Rare Epilepsy Network (REN) is working with urgency to collaboratively improve outcomes of rare epilepsy patients & families via research and advocacy.
Pal Neuro Lab
@palneurolab
We are a multidisciplinary team of basic and clinical neuroscientists finding the causes and mechanisms behind epilepsy and neurodevelopmental disorders
gnao1research
@gnao1research
Developing a cure for GNAO1 mutation disorders: patient advocacy + research + collaboration
Maksim Parfyonov
@mparfyonov
Pediatric Epileptologist @ClevelandClinic | @UBCmedicine and @BCCHNeurology alum
Deanna Portero
@deannaportero
Can we scale access to gene-targeted therapeutics in a rapid, efficient, sustainable & equitable way? ’25 MPH/MBA candidate at @JohnsHopskinsSPH & @JHUCarey
Colleen Johnston
@colleen30594857
n-Lorem Foundation
@n_lorem
Discovering, developing, and providing personalized experimental ASO medicines to treat nano-rare patients — for free, for life
RARE Revolution Magazine
@rarerevolutionm
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
David Lewis-Smith
@dlsneurocyclist
Dad & neurologist, semi-retired cyclist & musician, and student of the phenotypes & genetics of epilepsies aiming to improve outcomes for PWE.
Katrine M Johannesen
@katrine92658231
MD and PostDoc. training to be a clinical geneticist. Mother of three humans and most comfortable in rubberboots. Words and opinions are my own.
Jennifer Wong
@jcwong_phd
Neuroscientist | epilepsy | autism | Alzheimer’s disease | treatment development | genetics | pharmacology 🤓🧠🐭💉🧬🔬
Chuntao.Zh
@chuntaozh
Rachel
@rachel10302016
Rare Genetics. UBA5. EIEE44. Epilepsy. Family Support Specialist. East Toledo Family Center
lyndseyDAISY
@lyndsey40861200
Daisy team midwife #NLAG #continuityofcarer #betterbirths...... Bit of a micro-manager 🤷♀️ Embrace the change
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.
PA Rare Disease Advisory Council
@pararedisease
To improve the quality of life for all those affected by rare diseases in Pennsylvania.
Jessica Monty
@marthalou1926