Vico Therapeutics B.V.
@vicothera
A genetic medicine company committed to advancing RNA modulating therapies for patients with severe, genetic neurological disorders.
ID: 1573452833462026256
https://vicotx.com/ 23-09-2022 23:23:34
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Rett Syndrome✿✿GP2C
@girlpower2cure
#gp2c raises awareness & research funds for #RettSyndrome - head to the link below to get involved. Partners with: @rettuniversity & @rettgirl
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Pharm Exec Mag
@pharmexecutive
RSRT
@rsrt
The Rett Syndrome Research Trust: Our singular focus is a cure for Rett syndrome. DONATE: reverserett.org/donate/
Therese Alting
@theresealting
Hmm…work: neuropsychologist and Huntington’s disease. Fun: birding, chatting about ideas while drinking Shiraz.
Shana Verstegen
@shanamartin
TRX and ACE Master Instructor, Personal Trainer, World Champion Lumberjack Athlete, Fitness Model, Huntington's Disease Spokesperson, and overall goofy person.
Rett UK
@rettuk
Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families #SupportTodayHopeForTomorrow [email protected]
Rett Syndrome News
@rettsyndnews
#RettSyndrome news worldwide
International Rett Syndrome Foundation
@rettsyndrome
We are transforming lives every day in our fight to treat and cure Rett syndrome and better the lives of families living with this devastating disorder.
Cedars-Sinai
@cedarssinai
This account is no longer active, and messages are not being answered. For care inquiries, please visit cedars-sinai.org or follow our active social accounts.
MD Magazine Pubs
@mdmagazinepubs
MD Magazine is a re-imagined lifestyle guide for physicians, featuring unique articles that celebrate the culture and experience of being a doctor.
Rare Disease UK
@rarediseaseuk
National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
SWAN UK (syndromes without a name)
@swan_uk
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
Christopher Ricupero
@chrisricupero
Neuroscientist - Asst. Professor @Columbia University investigating rare neurological diseases & disorders #RareDisease, Gene Therapy #HNRNPH2 #HNRNPs
European Academy of Neurology
@eaneurology
The EAN unites and supports neurologists across Europe.
Rafa Vázquez #SinCienciaNoHayFuturo
@monkeyplatillos
@monkeycymbals.bsky.social Research in Huntington disease. Worm breeder. ANIH member. APETP member. The opinions expressed here are exclusively mine.
Rett Catalana
@rettcat
Asociación formada desde el 1994 por padres y madres para atender a familias con Rett. Buscamos la mejora en su calidad de vida y una cura para ellas.
ORSA
@ontariorettsa
ORSA Canada is a volunteer, non-profit charity for parents, researchers and medial professionals. We advocate for all Canadians affected by Rett syndrome.
Dr. Keerthi Krishnan
@keerthikrishna3
Neurobiologist. Assistant Professor. Posts on neuroscience, teaching, mentoring, advocacy. #womeninSTEM
Beacon for Rare Diseases
@rarebeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
ARSACS Ataxie Charlevoix-Saguenay
@soniagobe
CoFounder of the Ataxia of Charlevoix-Saguenay Foundation and advocate for Ataxia.
Sean Murphy
@murphyslaw1987
Philosopher of science/bioethics. I completed Purdey’s research by discovering the true causes (oil pollution, mercury, & mycotoxins) of “Huntington’s Disease”.
EPNS
@epnsnews
European Paediatric Neurology Society (EPNS): a society for physicians, health professionals, scientists and students with an interest in Child Neurology.
Rett University
@rettuniversity
#RettUniversity is an educational services org providing e-learning, support & training for the #RettSyndrome community. See also @girlpower2cure + @rettgirl
Cambridge Rare Disease Network (CamRARE)
@camraredisease
making #rarediseases an everyday conversation bsky.app/profile/camrar…
Friedreich's Ataxia News
@friedreichsatax
We are dedicated to sharing the latest news, research, and Friedreich’s ataxia patient perspectives.
Dr Wendy Gold
@wendygold11
#Neurodevelopmental disorders #epilepsy #biomarker discovery #rare disorders - The University of Sydney, the Children’s Hospital at Westmead
Whitney Schneider ☮️💜🎶
@wschneider412
Mom ♥️ Teacher 📚 Writer of #ownvoices biracial books 📝 Lover of Beatles music✌🏽#WNDB OSU🏈 #Amquerying #Rettsyndrome awareness ✝️
Jeannie Lee
@xistharvard
X chromosome inactivation, imprinting, non-coding RNA, repetitive elements, epigenetics, 3D genome 🧬; neurodevelopmental disorders and therapeutics
ERDERA
@erdera_org
The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
Saul Martinez-Horta
@smartinezho1
Neuropsychologist | Huntington's disease | Movement Disorders & Neurodegenerative diseases | 🏥@HospitalSantPau • @Cdincneurologia
Saudou Frédéric
@saudoulab
Cellular and molecular neurobiology of axonal transport, energy supply and Huntington disease. Opinions my own.
Alfonso Oyarzábal Sanz
@oyarzabalsanz
PhD_Researcher on neuropediatrics. Synaptic Metabolism and Rett syndrome.
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.
Hellenic Friedreich´s Ataxia Association
@hefaassociation
✊We advocate for #friedreichsataxia patients in Greece & 📣raise awareness for this rare disease. 📌Our ultimate goal is to help FA patients access a treatment.
Oxford-Harrington Rare Disease Centre
@ohraredisease
Rare Disease Centre @UniofOxford in partnership with @HarringtonDI_UH @UHhospitals, accelerating cures for rare diseases
Rarity Life
@raritylifemag
A new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.
Staci Hershman
@hershman52
An advovate for Rett Syndrome & Mecp2- Disorders and a Grassroots Advocate for the International Ocd Foundation #iocdf #rsrt
Ralph Hector
@ralphdhector
Developing molecular therapies for Rett syndrome (and more). Glaswegian at the University of Edinburgh.
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]
Michael S. Breen
@breenpsychgene
Associate Professor - Genetics & Genomics, RNA biology & therapeutics, A-to-I editing, brain aging & disease, neurodevelopment, rare disorders. Mentor | he/him
Alberta Rettsyndrome
@rssa2016
Rett Syndrome Society of Alberta
ern euro_nmd
@euro_nmd
Building bridges and breaking barriers in rare neuromuscular diseases.
Tamara Maiuri
@tam_maiuri
Huntington's disease researcher, climate activist. She/her
AtaxiasARG
@ataxiasarg
🇦🇷Ataxias Argentina #Ataxia #MovementDisorders #AtaxiaAwareness #Brain #Cerebro #Neurology #Neurologia #rarediseases #livingwithataxia #Research 👩🔬👨🔬
Rachel Spicer, PhD
@rachelmspicer
Postdoctoral Research Fellow at Vanderbilt University Medical Center 🧠 Alzheimer’s Disease & Sepsis 🧬 Business Owner of @ScarletRiverPR 🎸
The Barker / Williams-Gray Lab
@pdandhdlab
Actively doing clinical and lab-based research on both Parkinson's and Huntington's disease at the John van Geest Centre for Brain Repair. NIHR Investigator.
Celeste Suart
@suartce
Patient Engagement Manager @NAF_Ataxia 🧠 | PhD from @McMasterU on SCA1 & higher education 🔬 🧬📚 | #DisabledInSTEM | She/her 🏳️🌈 | Opinions are my own
Solve-RD
@solve_rd
Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.
SCAsource
@scasource
News and information about Spinocerebellar Ataxia research. Written by scientists in plain language that everyone can understand.