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
It's concerning when I see companies mass collecting patient data through so called "surveys" and "patient engagement" with minimal to no governance or ethical oversight, usually with a misleading or deceptive description. #EthicalPatientResearch #StopPatientDataHarvesting
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Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Big step forward for PBC Ireland. Real-world data. Patient voice. Global impact. A first for patient-led research in Ireland. #PBC #RareDisease #Innovation #CPath #PatientVoice c-path.org/pbc-ireland-pa…
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
📣 Major Announcement for PBC Ireland 📣 Our first academic paper emerging from the PBC Ireland Patient Registry has now been accepted for publication in the peer-reviewed journal Therapeutic Advances in Rare Diseases. This is a first for the PBC community in Ireland.
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
Too many people with PBC say clinic visits feel rushed and focused only on blood tests, leaving symptoms like fatigue, itch, and quality of life unheard...
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
🍀 PBC Awareness Day -- Sept 14th, 2025 -- Lá Feasachta PBC 🍀 PBC Ireland is here to support, connect, and advocate for everyone living with Primary Biliary Cholangitis in Ireland. pbcireland.org
Gerry Nesbitt @ CLIRINX Clinical Research IT retweeted
September is PBC Awareness Month...my voice, your voice, our voice...one community: PBC Ireland.
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
@TracyDixonSalaz My heartfelt condolences to you and your family.
No longer active on X. Find me at: bsky.app/profile/clirin…
Dennis Lal @LalDennis
3K Followers 319 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 918 Following Neuroscientist who found the drug that gave her daughter years. Now writing the book nobody gave her. CEO @lgsfoundation
Leah @LeahEDSCN2A
948 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.
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
DEE-P Connections @DEE_Pconnection
723 Followers 388 Following Connecting families with severe developmental & epileptic encephalopathies to information, resources and each other
CACNA1A Foundation @cacna1a
2K Followers 2K Following 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.
Prof Ingrid Scheffer @ingridscheffer
3K Followers 626 Following Laureate Professor of Paediatric Neurology at @unimelb, @theflorey, @austin_health, @RCHMelbourne. Research epilepsy, classn, genetics, speech & mentorship
Rikke S. Møller @FiladelfiaGene1
2K Followers 691 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
406 Followers 176 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
Bain Brain Lab @BainBrainLab
634 Followers 640 Following 🔬 Neurogenetics at Columbia | HNRNPH2 & brain development research | Dr. Bain | https://t.co/gC8EAdEbTX
International SCN8A A... @SCN8AAlliance
837 Followers 446 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
John J. Millichap MD @JohnMillichapMD
3K Followers 962 Following Pediatric Epileptologist @Precis_Epilepsy; Editor @PedNeurBriefs. Tweets my own; RTs not endorsements.
Jill Hawkins @fam177a1mamma
442 Followers 737 Following Founder and President, FAM177A1 Research Fund
Eduardo Pérez Palma @EdoPerezP
396 Followers 481 Following Investigando genética y epilepsia, with a Latino twist🧬🧠.
AGE Program - Adult G... @DrDaniAndrade
2K Followers 660 Following Professor of Neurology @UofT. Director, #AdultGeneticEpilepsy Program @UHN. Chair of @IlaeWeb #TransitionTaskForce #EpilepsyGenetics #neurotwitter
Jonathan Anderzon @hjanderzon
44 Followers 375 Following
Magnivel Internationa... @magnivel
83 Followers 3K Following Magnivel International is an Open Access publisher and international scientific conferences and expo Organizer.
Jeronimo Lukin @Jer0nimoLukin
511 Followers 2K Following 🇦🇷⚽🏆 🐞| Neuroscience 🧠 | Postdoc @DeRubeisLab
PBC Ireland @PBCIreland
13 Followers 44 Following Primary Biliary Cholangitis (PBC) News and Information
CureSHANK @CureSHANK
321 Followers 717 Following Relentlessly focused on turning science into life-transforming therapies for #phelanmcdermidsyndrome.
Sandra Sermone ADNP F... @ADNPkids
184 Followers 188 Following Founder ADNP Kids Research Foundation, Advocate, Speaker, Pl and Research Author. Mother trying to cure ADNP Syndrome.
Sirthee @SirtheeofbnOW
17 Followers 498 Following
Tauglushawsl @TauglushawslzK
42 Followers 1K Following
CARRA @carrainc
1K Followers 978 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
401 Followers 3K Following A Biomedical research Organization dedicated to influence Health policy and practice in Africa. Research | Community Service Delivery | Training | Consultancy
Sirsoyez @Sirsoyez3yEo
25 Followers 960 Following
Selea @Seleau8vnE
17 Followers 782 Following
Paula @paulateamenceph
920 Followers 7K Following I support @encephalitis International & @ocdaction @epilepsyaction volunteer & #OCDAdvocate, @cbituk, Global #EncephalitisAwareness #OCDAwareness.
Teighf @TeighfFChV
60 Followers 2K Following
The Chandler Project ... @thechandlerproj
77 Followers 187 Following Providing advocacy 📣 awareness 💡 research 🔬 & support 💜 for #achondroplasia, #hypochondroplasia, and other skeletal dysplasias 🧬
iPain Foundation Rese... @iPain_Research
2K Followers 3K Following Supporting @iPainOfficial & @powerofpain Research Projects #NERVEmber
DYNC1H1 Association @dync1h1
68 Followers 285 Following Mission: Create research opportunities & support networks for those with DYNC1H1 gene variants.
Lorrie @LorrieForseth
3K Followers 2K Following
clairebear @ceo_afp
236 Followers 881 Following Co-founder and CEO of Claire. Making Doctors Great Again.
The E.WE Foundation @EveryoneIsWe
274 Followers 215 Following Global healthcare advocacy network for families affected by Trisomy 18 (Edwards Syndrome) and other rare and complex medical conditions.
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
13 Followers 233 Following Success is not FINAL, failure is not FATAL, it is the COURAGE to continue that MATTERS
Mary Howard @Donations_hub
676 Followers 7K Following Crowdfunding Campaign Specialist| $10M Raised with real and Active Donors/Backers| Fiverr: inbox with your campaign
Emily @Noshiez3GXh4A
16 Followers 3K Following
Turlare @TurlareJeQ
4 Followers 374 Following
Samiye Çakıral @RalCak93838
9 Followers 354 Following
Carman Deda Lake @Momof3DLakes
177 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
The Rare Disease Data... @_theRDDR
4 Followers 67 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
14 Followers 681 Following 5th Euro-Global Summit on Future of Biologics and Biosimilars
PubCaseFinder @PubCaseFinder
407 Followers 616 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
327 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
166 Followers 257 Following We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Alan Finglas @AlanFinglas1
250 Followers 571 Following Founder/Research Manager of MSD Action Foundation, my son is affected by Multiple Sulfatase Deficiency, a clinically devastating Lysosomal Storage Disorder.
Carethriving @CarethrivingLLC
551 Followers 512 Following Helping parents and professionals support kids with complex needs. Sensory & Learning Toys | Caregiving Soft Skills | Community | Videos for Kids
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
145 Followers 122 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
357 Followers 490 Following Helping women obtain leadership positions through the POWER of their Voice. CEO/Founder of VICKtorious|Keynote|BSA|STEAM|Ed. #chronicpain #rare #MGwarrior #EDS
Andraes Stanc Lersan @rdahiya
53 Followers 3K Following
Sierra Phillips @RVAPhillipsFam
24 Followers 158 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
138 Followers 1K Following champs ist eine Aktion um Pädiater auf die seltene Erkrankung "Mukopolysaccharidose" (MPS) aufmerksam zu machen.
RAREsies Rule @itbe444me
314 Followers 544 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
74 Followers 181 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
72 Followers 606 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…
Dennis Lal @LalDennis
3K Followers 319 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
7K 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 772 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 918 Following Neuroscientist who found the drug that gave her daughter years. Now writing the book nobody gave her. CEO @lgsfoundation
Leah @LeahEDSCN2A
948 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.
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 28 February 2027 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are impacted by rare diseases. #RareDiseaseDay
DEE-P Connections @DEE_Pconnection
723 Followers 388 Following Connecting families with severe developmental & epileptic encephalopathies to information, resources and each other
CACNA1A Foundation @cacna1a
2K Followers 2K Following 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.
CURE SYNGAP1 aka SynG... @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 626 Following Laureate Professor of Paediatric Neurology at @unimelb, @theflorey, @austin_health, @RCHMelbourne. Research epilepsy, classn, genetics, speech & mentorship
Luke Rosen @lukebrosen
2K Followers 423 Following Founder of https://t.co/GkrwXhfkoy and https://t.co/eWtcezWeJc. Firefighter. Works with families affected by neurological diseases and cancer. Baseball and hockey. Proud dad.
Stéphane Auvin @stephane_auvin
2K Followers 819 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 278 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 691 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
406 Followers 176 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 582 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
634 Followers 640 Following 🔬 Neurogenetics at Columbia | HNRNPH2 & brain development research | Dr. Bain | https://t.co/gC8EAdEbTX
Epileptic Disorders @EpiDisorders
5K Followers 34 Following Educational journal of the @IlaeWeb. Editor, @SBeniczky. Internship program & associate ed. @SheikhISMD, @joanajribeiro, @AlinaIvaniuk. SMM @drdavidasish
PBCers Organization @PBCers
1K Followers 196 Following Providing education and support for those suffering from Primary Biliary Cholangitis and other autoimmune liver diseases.
Cure Sanfilippo Fdn @CureSanfilippoF
1K Followers 654 Following 501c3 nonprofit - Mission: Advocate for & fund research directed toward a cure or treatment options for children with Sanfilippo Syndrome. Video at https://t.co/0WOT6g9S6G
Tullow Agricultural S... @Tullowagrishow
247 Followers 345 Following Tullow Agricultural Show. Sunday 20th August 2023. A great day out for all the family 🐂🐄🐎🐑🐩
PBC Ireland @PBCIreland
13 Followers 44 Following Primary Biliary Cholangitis (PBC) News and Information
Citrin Foundation @citrinfdn
65 Followers 82 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
77 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
354 Followers 291 Following Full Professor in Pediatric Neurology University of São Paulo
Beyond the Diagnosis @BeyondtheDx
8K Followers 5K Following Beyond the Diagnosis unites art and science to raise awareness for children living with life-altering diseases.
Christopher Ricupero @chrisricupero
981 Followers 3K Following Neuroscientist - Asst. Professor @Columbia University investigating rare neurological diseases & disorders #RareDisease, Gene Therapy #HNRNPH2 #HNRNPs
Lorrie @LorrieForseth
3K Followers 2K Following
clairebear @ceo_afp
236 Followers 881 Following Co-founder and CEO of Claire. Making Doctors Great Again.
World Orphan Drug Con... @orphan_drugs
638 Followers 409 Following The World Orphan Drug Congress is an award-winning orphan drugs & rare diseases event.
Brandi @brandi_whine
287 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.
champs @kejr35778464
138 Followers 1K Following champs ist eine Aktion um Pädiater auf die seltene Erkrankung "Mukopolysaccharidose" (MPS) aufmerksam zu machen.
CARRA @carrainc
1K Followers 978 Following We conduct collaborative research to prevent, treat and cure pediatric rheumatic diseases. A world free of limitations from pediatric rheumatic diseases.
RareDiseasesGreece @RareDiseasesGr
136 Followers 172 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
274 Followers 215 Following Global healthcare advocacy network for families affected by Trisomy 18 (Edwards Syndrome) and other rare and complex medical conditions.
CASK Research UK @CASKResearch
150 Followers 324 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 329 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
182 Followers 42 Following
Skinny Genes Foundati... @smardiac
454 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
68 Followers 285 Following Mission: Create research opportunities & support networks for those with DYNC1H1 gene variants.
iPain Foundation Rese... @iPain_Research
2K Followers 3K Following Supporting @iPainOfficial & @powerofpain Research Projects #NERVEmber
CdLS Foundation @CdLSFoundation
1K Followers 956 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
722 Followers 622 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
603 Followers 622 Following Assistant Director of Nursing - Evidence Based Nursing Research & Innovation, St. James's Hospital.
Carman Deda Lake @Momof3DLakes
177 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
11K Followers 5K Following Delivering #digital health for Ireland | @HSElive #HIT #ConnectedHealth | Not monitored 24/7 Content on #DigitalForCare #Benefits #Leadership #eHealth4All
Roscommon Herald @RoscommonHerald
8K Followers 2K Following County Roscommon's most read newspaper covering news, sport and community notes.
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
619K 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
80K 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 216 Following Child Neurologist and Sleep Specialist All posts represent my thoughts and views
Cure LBSL @CureLbsl
492 Followers 489 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 526 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 94 Following 1. Facebook: RoscommonFootballLegends 2. Instagram: roslegends 3. Tik Tok: https://t.co/TSkHmCBqe7
The Rare Disease Data... @_theRDDR
4 Followers 67 Following We help you share your research data securely. No longer active on X. Find me at: https://t.co/aiXTHSBN5o
Simons Foundation @SimonsFdn
22K Followers 329 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
1K Followers 699 Following Mom-created resource for parents of children with #disabilities, #rarediseases and #specialneeds
aycan Medical Systems @aycanmedical
513 Followers 116 Following With a focus on vendor neutrality and immediate, live customer service, aycan helps improve workflow efficiency and drive down costs. aycan is part of PARATUS.
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
190 Followers 40 Following Medical Neuroscience is the study of the brain and nervous system, examining its structure, function, chemistry and physiologyYou might like
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Simons Searchlight
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stxbp1
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CRID - Unique Patient...
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