IDefine
@idefineorg
IDefine is committed to identifying life-changing treatments & cures and building community for those with Kleefstra Syndrome and intellectual disabilities.
ID: 1285999448590635016
22-07-2020 18:05:59
117 Tweet
111 Followers
169 Following
Matt Lockwood
@mattlockwood71
Michigander. Dad. Spartan. Warrior. Nobody rides for free.
Van Duesterberg PhD
@vancanwin
Patient Scientist Discovering a Cure For My Blindness and Helping Others While I Am At It. Postdoc @UCSF. Follow my journey at patientled.org
Kris Dougherty
@kwdougherty
Some people, man...
Nalin Kuachusri
@nalinmk
I don't want flashy clothes to distract from my hair.
Xtalks Webinars
@xtalks
Provides insight on Life Science issues (#Pharma, #Biotech, #MedicalDevice) via breaking news & interactive webinars with industry experts
a k b
@a_barke
La Jolla Labs Inc.
@lajollalabs
La Jolla Labs was founded by leaders in RNA therapeutics to leverage advances in automation and computing to build the world's fastest drug discovery pipeline.
MG
@mgzentgraf
Megan Bone MD
@meganbone1
pediatric neurodevelopmental neurologist - despite the name Dr Bone 🦴 I am not an orthopedist!
Igor Ulitsky 💔
@igorulitsky
Associate Professor @WeizmannScience . lncRNAs, RNA biology, RNA therapeutics, gene regulation, all wet+dry. Father of 4. Not much time for anything else.
Beth 💙
@beth_tastic
#SEND parent & advocate supporting families, working with schools/disability forums/health boards etc to help improve practices around disabilities.
PPF
@playersphilfund
Via #FiscalSponsorship, PPF creates/administers charity projects for 550+ philanthropists (individuals, entities, athletes, celebs). #GivingBackMadeEasy
julia elman
@julzelman
Joey Cantu
@jcantu26
Husband, Father, Special Education Vocational Coordinator, Track and Field Coach, Football Coach, Disability Advocate, Plant Based Athlete: Naperville, IL
Simons Searchlight
@s_searchlight
Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: bit.ly/SFARI_BASE
Vanessa Vogel-Farley
@vvf_vanessa
SYNGAP1 Foundation
@syngap1fnd
SYNGAP1 Foundation is a legacy page dedicated to preserving the work and mission of our 100% charitable nonprofit in the USA, focused on #SYNGAP1
Angela Ramos
@angelaramos715
Advocate. Kleefstra Syndrome Awareness. Graduate student. Future special education teacher! Seint makeup artist.
Patient Worthy
@patientworthy
We're a resource for engaging, informative content and rare patient news, well done.
Cunegonde
@cun3gond3
Graduate of History, Archaeology and Social Anthropology.
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.
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.
AnonymousGirl🌹 #Swiftie #FreeBritney Activist
@xxfabby_xo
♡ Just a girl on the internet ♡ Citizen Journalist ♡ True Crime Junkie #TaylorSwift #PopCulture #PedroPascal #TrueCrime #FreeBritney2.0 #Sidemen
Koch Career Services KCS
@kochcareersrvcs
Provider of operations, project management, & executive administrative support to c-level executives & startup visionaries. . 1st Generation Owned and Operated
Sabrina Rivero
@sabrinariv94912
Rareminds
@raremindsuk
Specialised mental health and wellbeing services for the rare disease community. bit.ly/rarementalheal…
Fiona Heslehurst
@kleefstramum
Mum, Wife, Kleefstra Mum, Parent carer, founder of Kleefstrasyndrome.org charity, Scentsy Consultant and Tropic Ambassador. Keeping busy & staying positive! 💜
Kares Foundation
@karesfoundation
Improving the lives of those affected by KDM5C genetic variants through Advocacy, Research, Education & Support 🧬 linktr.ee/karesfoundation
Angela Miller
@definingangela
Just a small town girl & big time advocate defining me a chapter at a time and making memories along the way 🖤
Greenville360
@gvl360
Your authentically curated blog, social media & 360 view of everything Greenville, SC. Share with us via #greenville360 📲
Fabiola Ceroni
@ceronifabiola
Erin Smith, MPH
@justerintoday
Rare disease patient advocacy & engagement Lover of dogs + hiking + food Always in service of Graham's legacy (b.3/17/14-d.8/2/14) Views are my own
CRID - Unique Patient ID/clinical research
@_thecrid
More data sharing, less data silos. I prefer BlueSky . Find me at: bsky.app/profile/thecri…
Elly Lewerissa
@ellylewerissa
PhD candidate in neurobiology at human genetics Radboudumc, Nijmegen. Interested in autophagy, neurodevelopmental disorders and 🚲📷🎼
GETA
@geneticepilepsy
GETA: GET A Team, GET A Target, GET A Cure for genetic epilepsy
John Oldenhof, PhD
@john_oldenhof
Neuroscientist, parent advocate for son with #STXBP1 related disorder @curestxbp1 and early phase drug developer.
kinva
@kinvahealth
Kinva is an AI-driven, global community platform transforming the delivery of lifecare. The world's first digital multidisciplinary clinic builder.
118 Huskies
@nnhs118
Your favorite classroom at Naperville North High School #118 #Multineeds
Lottie Morison
@lottiedmorison
Speech pathologist🗣PhD candidate @MCRI_Speechlang @UniMelbMDHS Interested in kids w/ genetic conditions & complex communication needs🧬 She/Her | Views my own
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.
Selena Miller
@selenam43208782
Kieran Baker
@kieranb11432013
Kieran baker
Ashley Fortney Point
@ashleypoint1
Rare disease advocate, mom to Davis with KdVS, #KdVSF #MyKoolBrother, #epilepsy #KdVS #DavisOutoftheUnknown
CAMHS-ID Cork Team
@camhsid
Pilot #Telepsychiatry and #ereferral site #Children #Mental_Health in #Intellectual_Disabilites. @CAMHSID not monitored 24/7. Service queries to HSE live. #PPSN
Debsmurf
@debsmurf1
Nurse, views are my own.
Assisting TCA
@therapycareapp
An administrative platform created specifically for use by developmental disabilities (DD) and applied behavior analysis (ABA) providers.
RareRising
@rarerising_org
RareRising, is a 501c3 that delivers research, incubates emerging rare disease entities, and explores solutions to positively impact rare disease communities.
Nicoletta Balbo
@sissinicobalbo
Ikanyeng Disability Centre
@centreikanyeng1
Ikanyeng Disability Org,2017Boitekong Rustenburg A home for people with disabilities to learn and have a safe space grow.
TheRareFair
@therarefair
Powered by @tda4rare, The Rare Fair is the original virtual event designed for all members of the rare disease community. therarefair.com