CDKL5 - IFCR
@cdkl5_ifcr
501(c)(3) dedicated to advocacy, research & cures for #CDKL5 Deficiency Disorder - a Developmental & Epileptic Encephalopathy (DEE). Formerly used @CDKL5_USA
ID: 513586864
http://cdkl5.com 03-03-2012 20:51:37
2,2K Tweet
1,1K Followers
617 Following
jpcherry
@jpcherry
Personal Account | 🤖🛩️ | 🚀⚙️| 🐬 | 🧬🎭 | 🦑💜 | 🤰🔬|
Jainu Jogani
@jainu11
fb.com/reynascure Working toward finding a cure for daughter's rare, random, ruinous genetic condition called CDKL5. One step at time.
mark jackson
@jacksoma
Mary Powers
@mfpowers
sara teal
@sarateal1
Peter Halliburton
@phalliburton
Raising $$ for #SYNGAP1 🧬 gene therapy // @cureSYNGAP1 501(c)(3) Board // Carter & Presley’s Dad // @cyberark Channel Sales // TX 🇨🇱
MamaLewis
@anice00
Loving, loud-mouthed, sarcastic, Gen-X supporting, stage 3 surviving, common sense having, SN advocate! 🇺🇸
Ángel Aledo-Serrano
@aledoneuro
Neurologist🧠 Epileptologist, director of @Vithas @INeuroMadrid Institute & Epilepsy Center - #FND - Neurogenetics🧬 [email protected]
Esra Serdaroglu
@esraserdaroglu
Child neurologist interested in neuromodulation
Ana Mingorance
@cnsdrughunter
🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
Zohaib Hassan, PhD
@drzohaibh
Postdoctoral Researcher at @ZhejiangLab Hangzhou
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
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.
vinil teliki
@vteliki
Md general medicine
FamilieSCN2A
@familiescn2a
Our vision is to find effective treatments and a cure for SCN2A disorders.
Torie Robinson 🇺🇦
@torierobinson10
@EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
Telefono Verde Malattie Rare
@tvmr_cnmr
Il Telefono Verde Malattie Rare (TVMR) è una helpline dedicata alle malattie rare, istituita presso il @cnmr_ISS, risponde al n. 800.89.69.49.
Luke Rosen
@lukebrosen
Dad of two remarkable kids. Founder of KIF1A.org & Rescue7.org. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Leah
@leahedscn2a
Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
TallyLassie47@
@lisahair9
Christian mom grandma Dem anti racist- native Fl old with loads of common sense animal lover human rgts lover disabilities & survivor🚫DM Absolutely🚫Porn.
Manuel Vigara
@manuel_vigara
Dr. Giulia Quattrocolo
@gquattrocolo
Associate Professor at the Kavli Institute for Systems Neuroscience. #QuattrocoloLab. Mum. Interested in brain development, travelling and Medieval History.
DEE-P Connections
@dee_pconnection
Connecting families with severe developmental & epileptic encephalopathies to information, resources and each other
Miss Bethia Jordan ⚽⚽
@bethiajordan
I am funny and I like yeovil town fc and I love any sports
Brain Ablaze
@brainablaze
As people with Epilepsy, we raise awareness for Epilepsy and support anyone having seizures. | The Brain Ablaze Epilepsy Podcast | Blog | Support
sally
@shorton_neuro
Postdoc @TheCrick, former PhD candidate in @jbneuro lab @dev_neuro
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.
JPV
@jpv_tweets
SlS
@samanamudsaul
Allan Bayat, associated professor
@allanbayat
Pediatrician/translational researcher #Epilepsy #Genetics #PrecisionMedicine #CerebralPalsy #RareDisorders #EpilepsyAwarenessMonth #DanishEpilepsyCenter
ykaya
@ykaya1983
Melody_bch
@melodybch
pawel
@pawel06531914
Cats and tatts
CYSHCNet - Pediatric Health Systems Researchers
@cyshcnetwork
Our researchers & lived experience partners work to improve the health care system for children & youth with special health care needs and their families.
Esther Cameron
@estherrcameron
Haniiii_hnr
@haniyeh02352872
Kuopio Brain & Mind
@kuo_brain_mind
Kuopio Brain & Mind – Neurocenter Finland in Eastern Finland #kuopiobrainandmind #codedtoconnect @NeurocenterFI
Mei mei
@meimei37582680
Kathleen 'Kat' Dearinger™👍
@dandywalkerinst
Council Member, Colorado RDAC, CEO DW Brain Institute, Certified Human Rights Consultant 🙌, American Legion, Honor Guard & Proud Lion 🦁My opinions are MINE !
halsted st guy
@halsted431
I am a retired professional guy living in Chicago & Southern California
Bevilacqua Mathilde
@bevilsmathilde
Kerry Sands
@kcdonosans
OSCAR OTELE
@otele_oscar
Book of Award
@kajal_0211
Quillan
@oojiharama35615
United Democratic Front "UDF"
@buthelezinyembe
"The Struggle Continues"
MadgeJenkins
@k73k7dhd3c1vp9
毛哥
@mog1337001
Melinda Hughie Blalock
@mmhblalock
mom • wife • medical mom {epilepsy⚡️ASD} advocate 🧠epilepsy parent support navigator🫀#TAAD aneurysm & #THYCA🦋 survivor 🏥St. Jude fundraiser
NormaBoyle
@3pcbaeizrld0j
swéét
@swt886885614728
Thore
@thoreglkb6v8
Ben Forred
@zebrasites
I make and manage awesome websites for #raredisease advocacy organizations. Husband, father, rare disease patient/researcher, web designer 🤓
Emma L Cales
@drpepperpots
Doctor who fans page
@doctorwhopri
lovely fans Your cosmic joyride awaits +r #DoctorWho is streaming now on@bbciplayer and@disneyplus This is a commercial channel from @bbcstudios
Big Tyler
@josiki0pills
my priorit to help sad people to improve their mental health by recommending magic shrooms# #Lsd, $DMT, #XTC, #pills etc join telegram link on Bio #psychedelic
The Rare Disease Data Repository
@_therddr
We help you share your research data securely. No longer active on X. Find me at: bsky.app/profile/therdd…
MAGIC Clinic Canada
@magiccalgary
Ariciafreitas_
@ariciafreitas21
Sebastian Budweg
@budweg_s
knowledge is the best medical
Rareatives
@rareatives
Share Your Rare | Amplifying Rare Disease Voices 🎙️ 📖 Sharing stories from the 1 in 10 🧬 New patient-led publication #RareDisease #PatientVoicesMatter
ASOCIACIÓN CDKL5
@cdkl5spain
Asociación de Afectados por la mutación del gen CDKL5 o Síndrome de Deficiencia CDKL5 (CDD) en España.
AROGUNDADE MUIDEEN TUNDE
@dmuideen
Biochemist, Drosophilist, Neuroscientist, Nanoscientist, Bioinformatics, oncologist
Dr.Mamad Omar
@mamadomar5
My career has been driven by my fascination of neurology, using electrophysiological recording and Optogenetics to assess cognitive processing of learning.
Dr. Ashley Nguyen-Martinez
@drashleynm
She/Her. 1st gen. Viet Am. Peds neuropsychologist @Childrenscolo. Asst Prof @CUanschutz. Epilepsy & (Neuro)Genetics. Advocate. Decolonizer. Rescue dog mom.
KIF1A.ORG
@kif1a
We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
Heidi Grabenstatter
@patientintv
RDCA-DAP Scientific Director @CPathInstitute, patient advocate, neuroscientist, and proud mom. Opinions are my own.
Paula
@paulateamenceph
I support @encephalitis International & @ocdaction @epilepsyaction volunteer & #OCDAdvocate, @cbituk, Global #EncephalitisAwareness #OCDAwareness.
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