3 Followers 64 FollowingWe're building the AI-powered tools patients deserve. One place for all records + intelligent insights. Engineering healthcare's future. Join our mission.
2K Followers 617 FollowingRare Epilepsy Network (REN) is working with urgency to collaboratively improve outcomes of rare epilepsy patients & families via research and advocacy.
358 Followers 819 FollowingPan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
468 Followers 4K FollowingRaising awareness 4 genetic disorders causing aortic dissections. Turning tragedy into purpose after losing my dad to the #genetic disorder I was diagnosed with
8K Followers 7K FollowingThe official journal of the European Society of Human Genetics, providing insights into human genetics, genomics, molecular, clinical and cytogenetics research
681 Followers 1K FollowingEmergence Health Network is the Local Mental Health & IDD Authority in El Paso TX, providing a wide array of services for children and adults.
958 Followers 801 FollowingClinical Geneticist and researcher. Aims to do inclusive research enabling person-centered, strengths-based rare condition care and support. Together we can 💜
2K Followers 3K FollowingSame but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
550 Followers 2K FollowingI am a mother to with 2 10yr old twins both with autism but very different ends of the spectrum but I am still a proud mum ❤️ 💖 💙
363 Followers 593 Following#SynGAP1 Papa, Husband, ID and drug dev doc, Science fanboy, #RareDisease Advocate alongside @cureSYNGAP1, Music fan... here to help so just ask *views=my own*
272 Followers 217 FollowingHealthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
294 Followers 485 FollowingOur mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.
Find us: @chelseashopelaforacure
847 Followers 1K FollowingRegistered Genetic Counsellor @GenePeopleUK. working in the voluntary sector to support the Genetic community. @theAGNC EDI Sub-committee member.
2K Followers 1K FollowingDevelopmental neurobiologist studying human brain development and disease using 3D brain organoids. Group Leader @MCRI_for_kids @reNEW_Global🧠 🔬
5K Followers 2K Followinghttps://t.co/fyNyv0FS57 The first biotech public benefit corporation est. 2014. Direct-to-patient and decentralized. Co-owner @epalrestat
2K Followers 4K FollowingUse RareLook™ for a science-backed, DIY second opinion*. Share with doctor, who gets free RareMDx™ access, adds EHR data, generates rare diseases-included DDx.
147 Followers 321 FollowingI’m the 6th person in the wld diagnosed with a Syngap1 mutation in 2012. My mom @mlweldon5 started the first org in the world @syngap1fn to help & tell my story
3K Followers 3K FollowingSYNGAP1 Foundation is a legacy page dedicated to preserving the work and mission of our 100% charitable nonprofit in the USA, focused on #SYNGAP1
2K Followers 2K FollowingNonprofit dedicated to a brighter future for those with CACNA1A variants. On a mission to fund life changing research while supporting families along the way.
676 Followers 765 FollowingWorkaholic pediatric cardiovascular medical geneticist 🧬 with lupus💉, a love for babies with congenital heart disease 🫀 & @LadyGaga✨. My thoughts are my own.
16K Followers 3K FollowingGenetics in Medicine, an official journal of @TheACMG Site use policy: https://t.co/gMGoSv2TJY. Cover image by https://t.co/CqIOOiJw29 user fanjianhua.
151 Followers 141 FollowingWelcome to the Brain Research Across Development Lab! Located at the University of South Carolina (@UofSC) and directed by Dr. Caitlin Hudac (@greatcait)
891 Followers 1K FollowingChildNeurologist @BostonChildrens/HMS. Using network imaging to understand/develop new therapies for #autism. https://t.co/HYybZnTEr4
1K Followers 926 FollowingMAGIC Foundation is the global leader in endocrine health, advocacy, education, and support for adults and children with growth disorders.
18K Followers 4K FollowingAmerican College of Medical Genetics and Genomics (ACMG): Translating Genes into Health® @GIMJournal #ACMGMtg26 #ACMGFoundation Site Use https://t.co/9QchBLtCEG
15K Followers 594 FollowingNational Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. RT does not equal endorsement.
190 Followers 236 FollowingIDDRC accelerates cutting-edge research that focuses on the prevention, diagnosis and treatment of intellectual and developmental disabilities. #neuroscience
1K Followers 249 FollowingOfficial Boston Children’s #ChildNeurology and #NeurodevelopmentalDisabilities Residencies account. Follow to learn about us! 👶🧠🥼Disclaimer: https://t.co/PLimvdL4LI
3K Followers 642 FollowingLaureate Professor of Paediatric Neurology at @unimelb, @theflorey, @austin_health, @RCHMelbourne. Research epilepsy, classn, genetics, speech & mentorship
15K Followers 753 FollowingWe support research and education for professionals working towards a world without epilepsy. RTs ≠ endorsements. Also @amepilepsysoc.bsky.social.
675 Followers 166 FollowingMultidisciplinary, translational #epilepsy #genetics clinical care and research team @BostonChildrens. Disclaimer: https://t.co/z1MUJBFDdD
1K Followers 144 FollowingThe Department of Molecular and Human Genetics at @BCMHouston is transforming medicine, research, and education in genetics and genomics.
321 Followers 324 FollowingMedical geneticist (MD, PhD) interested in epilepsy and other neurodevelopmental disorders. University hospital of Lyon and Claude Bernard University Lyon 1.
6K Followers 1K FollowingHelping children back to health - caring for the most seriously ill or injured children and youth from across B.C. Privacy: https://t.co/fxb9a4V1EG
15K Followers 2K FollowingNational charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign Rare Disease UK and support network @SWAN_UK.
23K Followers 2K FollowingA non-profit network transforming health through genetics. 🧬 We promote openness in health systems, advocacy, empowerment, informed decisions, and access.
5K Followers 2K FollowingRareShare is a social platform building communities for patients, families, and healthcare professionals affected by rare medical disorders.
21K Followers 2K FollowingNational campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them.
#RareDisease.
8K Followers 489 FollowingNIH-funded network fostering collaborative research among 19 teams of researchers, patients, and clinicians, each focused on a group of rare diseases.
16K Followers 1K FollowingBreaking news, patient stories & FDA updates within the rare disease community. Listen to our podcast: https://t.co/xUkFDfCDUV, hosted by @GiulianaGrossi
8K Followers 495 FollowingChanging the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research.
https://t.co/qWTTVoKeyL
349 Followers 258 FollowingClinical Research Unit (CRU) at The Neuro - a leading centre affiliated with McGill | Unité de recherche clinique du Neuro, un centre de pointe affilié à McGill
235 Followers 826 FollowingA new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.
174 Followers 66 FollowingTogether for Rare Diseases is a multi-stakeholder alliance supporting ERNs and industry to collaborate for the benefit of the rare disease community
7K Followers 3K FollowingNonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
4K Followers 2K FollowingThe European Rare Diseases Research Alliance.
Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
133K Followers 2K FollowingAndré Picard is the health columnist at The Globe and Mail and author of "NEGLECTED NO MORE". I tweet about public health, health policy, and journalism.
40K Followers 3K Following#NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
32K Followers 1K FollowingAn alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
42K Followers 3K Following29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
243 Followers 381 FollowingSmith-Kingsmore Syndrome is a rare genetic disease. We are committed to improve quality of life through medical advancements and community support.
2K Followers 617 FollowingRare Epilepsy Network (REN) is working with urgency to collaboratively improve outcomes of rare epilepsy patients & families via research and advocacy.