SATB2 Gene Foundation
@satb2gene
ID: 1013242984488370176
http://satb2gene.org 01-07-2018 02:08:47
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Rebecca Green
@grassisgreenre
craniofacial biology, development and evolution. She/her. Asst. Prof. Tweets my own.
NIH
@nih
Official account of the National Institutes of Health. NIH...Turning Discovery Into Health®. Privacy Policy: go.usa.gov/x9svN Engagement ≠ endorsement
Arizona State University
@asu
Repeatedly ranked No. 1, ASU is a Research 1 university committed to excellence, access and impact. #ASULife
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
The Masters
@themasters
Official Twitter of the 90th Masters Tournament — April 9-12, 2026. Learn more at masters.com
Apraxia Kids
@apraxia_kids
National 501(c)3 nonprofit for children with #apraxia of speech and their families. Dedicated to up-to-date, reliable information for parents & professionals.
Dude Perfect
@dudeperfect
5 best buddies just kickin' it 🤠 [email protected]
The Royal Family
@royalfamily
The latest news and updates on the work of The King, The Queen and The Royal Family.
Global Genes
@globalgenes
Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
Red BAG Media
@redbagmedia
Website, Graphic, & Print Design. Branding. Social Marketing. Video Production.
Ruslan Dmitriev
@photobiolab
Assistant Professor @ResearchUGent @UGent_HSR @microscopyUGent 'FLIM gypsy' and developer of #FLIM #PLIM bio-/nanosensors for #organoids #3D PI @FlImagin3_DN
Simone Biles
@simone_biles
Wife. Olympic Champion. IG & snapchat: simonebiles
LOLITA PONCE
@kukita07
Profesional de la Salud,Lic.en Fonoaudiología.Especialista en Rehabilitación Neurológica, ACV .Amo La Vida y a todo Ser Viviente!!! Arte es ☮️ y Amor
Dr Lauren Parsons
@drlaurenparsons
Post-doctoral researcher at Curtin University
Mike Graglia 🌻
@jmgraglia
CEO @cureSYNGAP1 🧬 Pod SynGAP.Fund/10 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
Speech Pathology Australia
@speechpathaus
With over 15,000 members we advocate for Australians living with communication and swallowing difficulties. RT not an endorsement #SpeakUp4CommRights
Ana Mingorance
@cnsdrughunter
🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
Becky Sansbury
@aftrtheshock
Emotional Support Specialist | Rare Disease | Palliative Care | Author of "After the Shock" | former hospice chaplain | always a mom
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.
Zoom
@zoom
AI-First Work Platform for Human Connection ✨
Stephanie Fischer
@rarepov
#Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Suze Leitao
@suze_freogirl
SLP Clinician Researcher Academic, Curtin University #DevLangDis Moving to @suze-freo.bsky.social languageandliteracyinyoungpeople.com
Peter Krawitz
@krawitzpeter
For precision medicine human and artificial intelligence need to join efforts.
Lydia Timms
@lydiatimms
Speech Pathologist, Researcher: disability justice, ear health, literacy, AAC, cultural and communication barriers and strengths. Traveller:anywhere.
Terry
@reganter1
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.
Mathew Pletcher
@thepetridish42
Tweets are my own.
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.
UCL Speech Research
@ucl_speechresgr
University College London - Speech Research and Experimental Intervention Group
The Prince and Princess of Wales
@kensingtonroyal
The official account of The Prince and Princess of Wales, based at Kensington Palace.
FamilieSCN2A
@familiescn2a
Our vision is to find effective treatments and a cure for SCN2A disorders.
Mikey's Wish Foundation
@mikeyswish_vda
A registered UK Charity supporting people with all speech, language and communication needs, with an added interest in Childhood Apraxia of speech.
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
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.
The ADA Forsyth Institute
@forsythresearch
The ADA Forsyth Institute is the only independent research institute in the United States specializing in oral health and its impact on overall wellness.
Effie Parks
@onceuponagene
Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
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]
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.
dazzle4rare
@dazzle4rare
Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 linktr.ee/dazzle4rare
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 🎙
CRID - Unique Patient ID/clinical research
@_thecrid
More data sharing, less data silos. I prefer BlueSky . Find me at: bsky.app/profile/thecri…
Leah
@leahedscn2a
Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
Konrad Platzer
@platzer_k
Institute of Human Genetics @hug_leipzig @UKL_Leipzig • 👨💻 neurodevelopmental disorders (w/ epilepsy) 🧠 • rare diseases • gene discovery • apprentice in 📸
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
KAT6 Foundation
@kat6foundation
We support individuals who are living with KAT6A and KAT6B syndromes around the world. 🧬 We advance research aimed at developing treatments.
Jeyaram & Associates
@jeyaramattorney
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.
Rare Disease Innovations Institute
@rdii_org
RDII is a non-profit organization focused on education, engagement and to equip the rare disease community
Celia Azevedo Soares
@csoares_mdphd
Medical Geneticist MD 🧬 🇵🇹 Neurodevelopment PhD 🧠 🇺🇸 Getting into the world of higher education @UnivAveiro
Augie-Sanford GCGP
@asgcgp
developing future genetic counselors into astute communicators, scholarly professionals, & engaged members of their communities
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
TheRareFair
@therarefair
Powered by @tda4rare, The Rare Fair is the original virtual event designed for all members of the rare disease community. therarefair.com
Asociación SATB2
@asociacionsatb2
Visibilizamos para cuidar e investigar el síndrome asociado al SATB2. Síndrome de Glass, 2q33.1 de Familias para Familias.
Rare & Ready: A Genetic Condition Coalition
@rare_ready
Supported by BioMarin & Ultragenyx, the Coalition educates state policymakers on the impact of conditions. Social media guidelines bit.ly/3AzXLue
Saul Frankford
@frankfordsaul
Assistant Professor at @UT_Dallas, speech neuroscientist, who loves to sing Renaissance music.
The Free Press
@thefp
Honest. Independent. Fearless. A free press for free people. Listen to @thehonestlypod. Subscribe: thefp.com/subscribe
Child Apraxia Treatment
@childapraxia
Passionate about providing evidence-based information and resources about childhood apraxia of speech (CAS) for families and speech-language pathologists!
Kwang S. Kim
@kwangseobkim1
A new dad and postdoc at @ucsf_snl_bil studying speech motor control and learning.
Purdue Speech, Language, & Hearing Sciences
@purdueslhs
89 years of advancing discovery, translation, and practice at Purdue University. Top 10 ranked graduate programs in SLP (#2) & AuD (#8) in the nation!
Speech Motor Neuroscience Group
@motorspeech
A collaboration between the Brain, Language, & Acoustic Behavior Lab (Carrie Niziolek) and the Speech Motor Action + Control Lab (Ben Parrell) at UW-Madison
Melissa Skala
@melissa_skala
Carol Skornicka Chair @Morgridge_Inst | Professor @UWMadison_BME @UWMadison | Research is fun and I ❤️ photons #cancer🎗#microscopy 🔬 #metabolism⚡️ views=mine
Ilaria Testa
@ilariatesta4
Advanced BioImaging lab at SciLifeLab, KTH Stockholm. Our interest is to develop next generation nanoscopy platforms to advance the life sciences.
Dr. Deb Denman
@deb_denman
Speech Pathologist & Lecturer. Child language, HRQoL, clinical ed, person-centred care & implementation science. #InclusivEd #DevLangDis #SpeakUp4CommRights
Prof Natalie Munro
@nataliemunro3
Professor of Speech Pathology, Faculty of Health, Southern Cross University. Editor-In-Chief @IJSLP #DevLangDis researcher
Angela Jocson
@angela_joc
PSM in Biotechnology, Rare Disease Patient Advocate, @_allstripes.
PA Rare Disease Advisory Council
@pararedisease
To improve the quality of life for all those affected by rare diseases in Pennsylvania.
Effie Pearson
@effiepearson_
Post-doc researcher at @astonpsychology aiming to improve lives of individuals with neurodevelopmental conditions and intellectual disabilities
MCRI - Translational Centre for Speech Disorders
@mcri_speechlang
Examine speech & language in rare genetic disorders in children to better understand communication to help develop better targeted therapies.
Arthur Stefanski
@arthurste
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[email protected]
@bruengertobias