Gerry Nesbitt @ CLIRINX Clinical Research IT @clirinx
Clinical Research IT 🇺🇸 🇨🇮 for Epilepsy & Rare Diseases I prefer BlueSky. Find me at: https://t.co/brBoSKB5Co clirinx.com Ireland & USA Joined May 2015-
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Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
September is PBC Awareness Month...my voice, your voice, our voice...one community: PBC Ireland.
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Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
The PBC Ireland Patient Registry is now live!
CLIRINX was set-up 13 years ago today!
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
PBC Ireland has received full ethics approval from the IRB for our new patient registry. This marks a major milestone in our efforts to gather real-world data, support research and improve the lives of people living with PBC in Ireland. More to come! #PBC #PatientRegistry #Rare
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
CRID is the most patient-centric UPI system in research today. It bypasses regulatory complexity by staying out of clinical care and staying inside research domains. It enables ethical reuse of existing patient data and biospecimens and works in all rare disease networks.
CLIRINX delivers the world's most advanced patient-led registry for Primary Biliary Cholangitis (PBC). Developed with @PBCIreland, it sets a new standard for how rare disease data is collected, owned and used by patients, for patients. #PBC #PatientLed #PatientRegistry @_TheCRID
NIH's eutils service down?? "Search Backend failed: Database is not supported: pubmed" @NIH
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
We’ve released the Automatic CRID Creation API, making it easier for 3rd party applications to generate Clinical Research IDs (CRIDs) directly from within their systems. This is a big step toward improving data linkage across research studies #CRID #NoMoreDataSilos #RareDiseases
If you're a rare disease org or academic researcher using the CRID and your IRB needs support in determining if CRID is PHI or not, please contact us to get our statement, “Why the CRID Is Not PHI and Should Be Allowed in De-identified Research Datasets,” to assist in your IRB
The University of Melbourne has recently launched what may become the largest genetic epilepsy natural history study ever conducted, powered by the CLIRINX system! #RareDiseases #NaturalHistoryStudy #Genetics #Epilepsy
After 12 years focusing on the US rare disease market, CLIRINX is expanding in Ireland & the EU. We've deployed AWS infrastructure in Dublin to support local patient registries, natural history studies & clinical trial readiness. #RareDiseases #Ireland #GDPR
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
300+ genes, 6500+ rare disease patients — CRID is growing! The CRID Clinical Research ID database is helping to unlock data silos like never before. #Genomics #Genes #ClinicalResearchID #CRID #UniquePatientID #RareDiseases Also on BlueSky thecrid.bsky.social
No longer active on X. Find me at: bsky.app/profile/clirin…
Post on BSky bsky.app/profile/clirin…
Is your rare disease group thinking of starting a new Natural History Study or Clinical Trial Readiness Study? If so, talk to CLIRINX! clirinx.com #raredisease #epilepsy #clirinx #crid #innovation
Is your rare disease group thinking of starting a new Natural History Study or Clinical Trial Readiness Study? If so, talk to CLIRINX! clirinx.com #raredisease #epilepsy #clirinx #crid #innovation
Light Up Boyle Christmas 2024 gofund.me/c2d429cc
CLIRINX has just implemented a clinical/specimen management system at The Uni. of Melbourne's Epilepsy Research Centre. This game-changing platform is set to revolutionize genetic epilepsy research and patient care, supporting everything from diagnosis to complex genetic data.🧬
Dennis Lal @LalDennis
3K Followers 324 Following Director of the Center for Neurogenetics; Associate Professor at UTH - Neurogenetics & Informatics - My opinions are my own & do not reflect my employer.
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Tracy Dixon-Salazar @TracyDixonSalaz
3K Followers 934 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Leah @LeahEDSCN2A
963 Followers 1K Following Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
Torie Robinson 🇺�... @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
Heidi Grabenstatter @PatientIntv
2K Followers 2K Following RDCA-DAP Scientific Director @CPathInstitute, patient advocate, neuroscientist, and proud mom. Opinions are my own.
Mike Graglia 🌻 @JMGraglia
7K Followers 2K Following CEO @cureSYNGAP1 🧬 Pod https://t.co/9jkDkMg5R8 🎧 Alum @GonzagaU @peacecorps @pdosoros @SAISHopkins @Columbia_Biz @IFC_org @bcg @gatesfoundation @newamerica
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733 Followers 392 Following Connecting families with severe developmental & epileptic encephalopathies to information, resources and each other
Prof Ingrid Scheffer @ingridscheffer
3K Followers 642 Following Laureate Professor of Paediatric Neurology at @unimelb, @theflorey, @austin_health, @RCHMelbourne. Research epilepsy, classn, genetics, speech & mentorship
Rikke S. Møller @FiladelfiaGene1
2K Followers 703 Following Professor of Epilepsy Genetics; Head of Department of Epilepsy Genetics and Personalized Medicine at @Filadelfia_dk & SDU. Tweets are my own.
Al George @nupharm1
418 Followers 128 Following Ion channel biologist and pharmacologist; early adopter of automated patch clamp for studying channelopathies of the heart and brain
Brain Ablaze @BrainAblaze
10K Followers 7K Following As people with Epilepsy, we raise awareness for Epilepsy and support anyone having seizures. | The Brain Ablaze Epilepsy Podcast | Blog | Support
Bain Brain Lab @BainBrainLab
622 Followers 646 Following 🔬 Neurogenetics at Columbia | HNRNPH2 & brain development research | Dr. Bain | https://t.co/NMopRnTb1m
International SCN8A A... @SCN8AAlliance
854 Followers 451 Following The International SCN8A Alliance is working collaboratively with families, clinicians and researchers to advance the understanding of and treatments for SCN8A.
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Julia LeVan, MD @ExcitedBrains
1K Followers 1K Following Child Neurologist/ Epilepsy Specialist/ Expert in child development/ Mom to two challenging boys/ book lover/ permanent learner!
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
Jill Hawkins @fam177a1mamma
457 Followers 742 Following Founder and President, FAM177A1 Research Fund
Eduardo Pérez Palma @EdoPerezP
401 Followers 485 Following Investigando genética y epilepsia, with a Latino twist🧬🧠.
AGE Program - Adult G... @DrDaniAndrade
2K Followers 673 Following Professor of Neurology @UofT. Director, #AdultGeneticEpilepsy Program @UHN. Chair of @IlaeWeb #TransitionTaskForce #EpilepsyGenetics #neurotwitter
Magnivel Internationa... @magnivel
105 Followers 3K Following Magnivel International is an Open Access publisher and international scientific conferences and expo Organizer.
Jeronimo Lukin @Jer0nimoLukin
496 Followers 2K Following 🇦🇷⚽🏆 🐞| Neuroscience 🧠 | Postdoc @DeRubeisLab
PBC Ireland @PBCIreland
6 Followers 33 Following Primary Biliary Cholangitis (PBC) News and Information
CureSHANK @CureSHANK
325 Followers 712 Following CureSHANK's mission is to accelerate the development of treatments and cures for Phelan-McDermid Syndrome and other SHANK-related disorders.
ADNP kids @ADNPkids
186 Followers 190 Following ADNPkids is dedicated to helping families, care providers, researchers and medical professionals understand ADNP Syndrome aka Helsmoortel Van Der Aa Syndrome
Sirthee @SirtheeofbnOW
23 Followers 523 Following
Tauglushawsl @TauglushawslzK
67 Followers 1K Following
CARRA @carrainc
1K Followers 948 Following We conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases. A world free of limitations from pediatric rheumatic diseases.
Africa Medical and Be... @AMBSO3
410 Followers 3K Following A Biomedical research Organization dedicated to influence Health policy and practice in Africa. Research | Community Service Delivery | Training | Consultancy
Sirsoyez @Sirsoyez3yEo
32 Followers 1K Following
Selea @Seleau8vnE
15 Followers 800 Following
Paula @paulateamenceph
945 Followers 7K Following I support @encephalitis International & @ocdaction @epilepsyaction volunteer & #OCDAdvocate, @cbituk, Global #EncephalitisAwareness #OCDAwareness.
Teighf @TeighfFChV
72 Followers 2K Following
The Chandler Project ... @thechandlerproj
80 Followers 187 Following Providing advocacy 📣 awareness 💡 research 🔬 & support 💜 for #achondroplasia, #hypochondroplasia, and other skeletal dysplasias 🧬
iPain Foundation Rese... @iPain_Research
3K Followers 3K Following Supporting @iPainOfficial & @powerofpain Research Projects #NERVEmber
DYNC1H1 Association @dync1h1
64 Followers 287 Following Mission: Create research opportunities & support networks for those with DYNC1H1 gene variants.
wtfawkes @ceo_afp
276 Followers 700 Following Co-founder and CEO of Fawkes Biodata. Patients can support research & development if they own their medical record
The E.WE Foundation @EveryoneIsWe
271 Followers 217 Following Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
Catherine Stratton, M... @cathsmstratton
2K Followers 2K Following Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafdn #KnowledgeTranslation #RareDisease #Pain #Disability
Kristen Tomita @HezekiahJo82066
16 Followers 240 Following Success is not FINAL, failure is not FATAL, it is the COURAGE to continue that MATTERS
Mary Howard @Donations_hub
749 Followers 7K Following Crowdfunding Campaign Specialist| $10M Raised with real and Active Donors/Backers| Fiverr: inbox with your campaign
Emily @Noshiez3GXh4A
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Turlare @TurlareJeQ
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Samiye Çakıral @RalCak93838
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Carman Deda Lake @Momof3DLakes
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The Rare Disease Data... @_theRDDR
4 Followers 68 Following We help you share your research data securely. No longer active on X. Find me at: https://t.co/aiXTHSBN5o
BioL-BioS 2024 @BioLBioS2024
18 Followers 690 Following 5th Euro-Global Summit on Future of Biologics and Biosimilars
PubCaseFinder @PubCaseFinder
414 Followers 624 Following https://t.co/4Dvwe508Pf is a web-based clinical decision support system for rare diseases, operated by a public institution. #RareDiseases #DiagnosticOdyssey
Pro Bono Omics @ProBonoOmics
334 Followers 1K Following A journey to assist with rare disease challenges offering nil cost advice using computational modeling targeting personalized medicine for those in need.
Haystack Project @HaystackProject
172 Followers 260 Following We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Alan Finglas @AlanFinglas1
256 Followers 582 Following Founder/Research Manager of MSD Action Foundation, my son is affected by Multiple Sulfatase Deficiency, a clinically devastating Lysosomal Storage Disorder.
Carethriving @CarethrivingLLC
553 Followers 2K Following "Thriving Starts With Care." Supporting Special Needs Children, Parents, and Caregivers #AAC #augcomm #assistivetech #earlyintervention #caregiving #health
Gholson Lyon @GholsonLyon
5K Followers 5K Following physician-scientist; rare diseases; psychiatrist, Institute for Basic Research in Developmental Disabilities, professor at CUNY, professor at Roseman University
SCN2A Families UK @Scn2aU
142 Followers 124 Following Here to support families affected by SCN2A related conditions in the UK
Donald Gilbert @GilbertPedNeuro
1K Followers 1K Following Pediatric Neurologist, Researcher. Educator.
ForwardRolling @ForwardRolling
380 Followers 497 Following Helping women obtain leadership positions through the POWER of their Voice. CEO/Founder of VICKtorious|Keynote|BSA|STEAM|Ed. #chronicpain #rare #MGwarrior #EDS
Rajiv Dahiya MD @rdahiya
55 Followers 3K Following At the Intersection of Health Tech, AI, Cancer and Consumer Technology Solutions
Sierra Phillips @RVAPhillipsFam
29 Followers 160 Following Twin Mom, Rare Mom, Disability Mom, Genetics Enthusiast, and relentless Momvocate #WarsawBreakageSyndrome #RareComend
TAPS Support @tapssupport
2K Followers 2K Following Non-profit dedicated to raising the profile of #TwinAnemiaPolycythemiaSequence and supporting research. #TAPSisReal #TAPS #raredisease. Awareness day: March 3rd
champs @kejr35778464
169 Followers 1K Following champs ist eine Aktion um Pädiater auf die seltene Erkrankung "Mukopolysaccharidose" (MPS) aufmerksam zu machen.
RAREsies Rule @itbe444me
327 Followers 547 Following Born with Ollier's disease, 50 surgeries strong, supporting families with a RAREsie, like me! Raising funds for Educational Scholarships. VOLUNTEER position. 💪
Ryan McGinn @bodhisaxva
75 Followers 182 Following Father, Epileptologist, Assistant Professor at the University of Southern California. Interested in the interface of physics, neural engineering and epilepsy.
The Med13L Foundation @Med13L_Fdn
95 Followers 615 Following Supporting MED13L families through awareness, research, and community. Connecting hearts and minds to overcome challenges. #NDD #Epilepsy #Autism #ID 🧬💙🧠
TalkAboutIt.org @TalkAboutItorg
8K Followers 6K Following STIGMA BUSTING for epilepsy & MANY other conditions! Co-founder: @GregGrunberg. https://t.co/VlYrkdNHa5 PODCAST: https://t.co/vL91AKrO7L…
Advocate4Rare @advocate4rare
52 Followers 298 Following Rare Disease Advocate with lived experience | Carer| Committed to raising awareness for the Rare Community| Programme Mgt| Governance | Management Consultant
Anne Micks @annedmicks
236 Followers 869 Following Chair Irish EDS 🇮🇪 Rare Disease Advocate| Rare Ireland |Rare Diseases Ireland| Former Mgt Consultant. Views are my own.
rareparenting @rareparenting
4K Followers 712 Following Mom-created resource for parents of children with #disabilities, #rarediseases and #specialneeds
Dennis Lal @LalDennis
3K Followers 324 Following Director of the Center for Neurogenetics; Associate Professor at UTH - Neurogenetics & Informatics - My opinions are my own & do not reflect my employer.
Effie Parks @OnceUponAGene
6K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
American Epilepsy Soc... @AmEpilepsySoc
15K Followers 753 Following We support research and education for professionals working towards a world without epilepsy. RTs ≠ endorsements. Also @amepilepsysoc.bsky.social.
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
Tracy Dixon-Salazar @TracyDixonSalaz
3K Followers 934 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Leah @LeahEDSCN2A
963 Followers 1K Following Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
Torie Robinson 🇺�... @TorieRobinson10
6K Followers 2K Following @EpilepsySparks Insights Podcast Host & YouTuber 🧠🧬 | International Speaker | #Epilepsy & #MentalHealth Research fiend | @MaudsleyNHS Gvnr | All views my own
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
Rare Disease Day @rarediseaseday
42K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
DEE-P Connections @DEE_Pconnection
733 Followers 392 Following Connecting families with severe developmental & epileptic encephalopathies to information, resources and each other
SynGAP Research Fund ... @cureSYNGAP1
11K Followers 1K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
Prof Ingrid Scheffer @ingridscheffer
3K Followers 642 Following Laureate Professor of Paediatric Neurology at @unimelb, @theflorey, @austin_health, @RCHMelbourne. Research epilepsy, classn, genetics, speech & mentorship
Luke Rosen @lukebrosen
2K Followers 424 Following Dad of two remarkable kids. Founder of https://t.co/GkrwXhfkoy & https://t.co/eWtcezWeJc. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Stéphane Auvin @stephane_auvin
2K Followers 830 Following Child Neurologist & Epileptologist. Professor at @univ_paris_cite. Dept Chair at @HopRobertDebre. Senior member 2021 @InstUnivFr. Deputy Editor @EpilepsiaJourn
Renée Shellhaas, MD,... @RShellhaasMD
2K Followers 282 Following Child Neurologist, Epilepsy & Sleep Researcher, Senior Associate Dean for Faculty Promotions & Career Development @WUSTLMed Views are my own
Rikke S. Møller @FiladelfiaGene1
2K Followers 703 Following Professor of Epilepsy Genetics; Head of Department of Epilepsy Genetics and Personalized Medicine at @Filadelfia_dk & SDU. Tweets are my own.
Al George @nupharm1
418 Followers 128 Following Ion channel biologist and pharmacologist; early adopter of automated patch clamp for studying channelopathies of the heart and brain
KIF1A.ORG @KIF1A
1K Followers 590 Following We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
Bain Brain Lab @BainBrainLab
622 Followers 646 Following 🔬 Neurogenetics at Columbia | HNRNPH2 & brain development research | Dr. Bain | https://t.co/NMopRnTb1m
Epileptic Disorders @EpiDisorders
5K Followers 36 Following Educational journal of the @IlaeWeb. Editor, @SBeniczky. Internship program & associate ed. @SheikhISMD, @joanajribeiro, @AlinaIvaniuk. SMM @AlinaIvaniuk.
Tullow Agricultural S... @Tullowagrishow
257 Followers 362 Following Tullow Agricultural Show. Sunday 20th August 2023. A great day out for all the family 🐂🐄🐎🐑🐩
PBC Ireland @PBCIreland
6 Followers 33 Following Primary Biliary Cholangitis (PBC) News and Information
Citrin Foundation @citrinfdn
60 Followers 84 Following A research-driven, non-profit organization dedicating USD30m to tackle citrin deficiency over the next decade. We fund research and provide patient support.
The Chandler Project ... @thechandlerproj
80 Followers 187 Following Providing advocacy 📣 awareness 💡 research 🔬 & support 💜 for #achondroplasia, #hypochondroplasia, and other skeletal dysplasias 🧬
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
Kette Valente @KetteValente
343 Followers 287 Following Full Professor in Pediatric Neurology University of São Paulo
Beyond the Diagnosis @BeyondtheDx
9K Followers 5K Following Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
Christopher Ricupero @chrisricupero
994 Followers 3K Following Neuroscientist - Asst. Professor @Columbia University investigating rare neurological diseases & disorders #RareDisease, Gene Therapy #HNRNPH2 #HNRNPs
wtfawkes @ceo_afp
276 Followers 700 Following Co-founder and CEO of Fawkes Biodata. Patients can support research & development if they own their medical record
World Orphan Drug Con... @orphan_drugs
650 Followers 413 Following The World Orphan Drug Congress is an award-winning orphan drugs & rare diseases event.
Brandi @brandi_whine
294 Followers 3K Following MS & Narcolepsy Advocate. HSCT Veteran Northwestern 2015. Twitter OG, Weather g33k. WCNC Spotter. Duke. Sharks. Frenchie mom. Tiffany Blue. Jimmy Ear Wold.
EHDN News @EHDN_News
717 Followers 975 Following European Huntington's Disease Network newsletter. Please see our profiles on BlueSky and LinkedIn for the latest updates.
champs @kejr35778464
169 Followers 1K Following champs ist eine Aktion um Pädiater auf die seltene Erkrankung "Mukopolysaccharidose" (MPS) aufmerksam zu machen.
CARRA @carrainc
1K Followers 948 Following We conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases. A world free of limitations from pediatric rheumatic diseases.
RareDiseasesGreece @RareDiseasesGr
138 Followers 171 Following "#RareDiseases Greece" is the Greek RD Federation dedicated to improving the quality of life of all those affected by rare disorders | #ΣπάνιεςΠαθήσεις #Υγεία
The E.WE Foundation @EveryoneIsWe
271 Followers 217 Following Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
CASK Research UK @CASKResearch
162 Followers 329 Following We are a charitable foundation promoting research into CASK gene mutations and associated neurological conditions in hope of finding therapies and treatments
ANGEL-LISOSOMAL @ANGELisosomal
55 Followers 330 Following ANGEL es la Asociación Nacional Guatemalteca para las enfermedades lisosomales. Apoyamos a la comunidad de pacientes que sufren de estas condiciones genéticas.
RareDiseaseDiversityC... @rarediseasediv1
185 Followers 42 Following
Skinny Genes Foundati... @smardiac
468 Followers 4K Following Raising awareness 4 genetic disorders causing aortic dissections. Turning tragedy into purpose after losing my dad to the #genetic disorder I was diagnosed with
Catherine Stratton, M... @cathsmstratton
2K Followers 2K Following Epidemiology PhD(c) @UofT; @CIHR_IRSC CGS-D & @fdnPETF Scholar; MPH @Yale; VP & Research Chair @moyamoyafdn #KnowledgeTranslation #RareDisease #Pain #Disability
Rare Disease Research... @RD__RP
181 Followers 103 Following Rare Disease Research Partners support research and access to treatment for people living with rare conditions. Serving rare disease communities.
DYNC1H1 Association @dync1h1
64 Followers 287 Following Mission: Create research opportunities & support networks for those with DYNC1H1 gene variants.
iPain Foundation Rese... @iPain_Research
3K Followers 3K Following Supporting @iPainOfficial & @powerofpain Research Projects #NERVEmber
CdLS Foundation @CdLSFoundation
1K Followers 964 Following Cornelia de Lange Syndrome, promoting research & providing support to individuals with CdLS & their families 860.676.8166 #raredisease #cdlsawareness
The Sturge-Weber Foun... @SturgeWeber
724 Followers 626 Following Embracing our uniqueness. We may be rare, but we're also one in a million! Awareness and support for those living with SWS, KTS, PWB, Glaucoma, Seizures.
Julie O' Grady @Julie_o_grady
623 Followers 652 Following Assistant Director of Nursing - Evidence Based Nursing Research & Innovation, St. James's Hospital.
Carman Deda Lake @Momof3DLakes
199 Followers 1K Following DSMomof3 606 NATIVE GulfVet HM3, RMA Humanitarian Mission Focused cPTSD,MST,Trauma&multi-Cancer Survivor w/rare CACNA1A Gene Mut Parent,Pt&Advocate, Influencer
HSE Technology and Tr... @HSETandT
12K Followers 5K Following Delivering #digital health for Ireland | @HSElive #HIT #ConnectedHealth | Not monitored 24/7 Content on #DigitalForCare #Benefits #Leadership #eHealth4All
Roscommon People @RoscommonPeople
6K Followers 1K Following Roscommon's most read newspaper. Have a story? Email [email protected]. Want to advertise? Email [email protected] #RoscommonPeople
WTO @wto
617K Followers 982 Following Official account of the World Trade Organization. You can also follow @OMC_fr en français and @OMC_es en español.
Linux Magazine @linux_pro
81K Followers 2K Following Linux Magazine is your guide to the world of Linux and open source. @[email protected] Bluesky: https://t.co/pWCi1akeDK
Dr Anne Marie Morse @DAMMGoodSleep
571 Followers 217 Following Child Neurologist and Sleep Specialist All posts represent my thoughts and views
Cure LBSL @CureLbsl
497 Followers 497 Following LBSL is a degenerative brain/spinal cord disease. There is no cure but there is lots of hope. / a.k.a. #TheAwesomeDisease
CliniSpan Health @CliniSpanHealth
1K Followers 2K Following Maximizing the power of social media for clinical research diversity.
Apraxia Kids @Apraxia_KIDS
7K Followers 534 Following National 501(c)3 nonprofit for children with #apraxia of speech and their families. Dedicated to up-to-date, reliable information for parents & professionals.
RoscommonGAALegends @RosLegends
3K Followers 91 Following 1. Facebook: RoscommonFootballLegends 2. Instagram: roslegends 3. Tik Tok: https://t.co/TSkHmCBqe7
The Rare Disease Data... @_theRDDR
4 Followers 68 Following We help you share your research data securely. No longer active on X. Find me at: https://t.co/aiXTHSBN5o
Simons Foundation @SimonsFdn
21K Followers 321 Following Advancing the frontiers of basic science through grantmaking, research and public engagement. Sign up for our newsletter: https://t.co/s7KhKAFrjE
Rohit Aggarwal @docrota
6K Followers 4K Following Rheumatologist, research in Myositis & Interstitial lung disease, medical director, Myositis Center, Professor of Medicine, @UPMC @pittrheum
rareparenting @rareparenting
4K Followers 712 Following Mom-created resource for parents of children with #disabilities, #rarediseases and #specialneeds
aycan Medical Systems @aycanmedical
518 Followers 118 Following With a focus on vendor neutral integration and service, aycan is a provider of medical imaging products and services that improve workflow and drive down costs.
CENTOGENE @Centogene
3K Followers 2K Following The essential biodata life science partner for rare and neurodegenerative diseases
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Medineuronuke @medineuronuke
170 Followers 40 Following Medical Neuroscience is the study of the brain and nervous system, examining its structure, function, chemistry and physiology
Anne Micks @annedmicks
236 Followers 869 Following Chair Irish EDS 🇮🇪 Rare Disease Advocate| Rare Ireland |Rare Diseases Ireland| Former Mgt Consultant. Views are my own.Trends for United States
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