Rare Diseases Clinical Research Network @rarediseasesnet
NIH-funded network fostering collaborative research among 20 teams of researchers, patients, and clinicians, each focused on a group of rare diseases. RareDiseasesNetwork.org United States Joined October 2011-
Tweets2K
-
Followers8K
-
Following504
-
Likes1K
NCATS offers a wide range of opportunities to work with other research partners to speed up science and support young translational scientists through training. Read how you can get involved: go.nih.gov/dktQxfR
🎙 New podcast episode! ➡️ Summarizing Current and Developing #Pharmacologic Agents for Improving #SkeletalHealth in Adults with #OsteogenesisImperfecta Listen and subscribe: spreaker.com/episode/bbdc-s…
Check out the latest @ncats_nih_gov newsletter, featuring stories shared at #RareDiseaseDay @NIH, #RareDisease research news, and more! ✉️ mailchi.mp/ncats/ncats-e-…
What are we learning about #PhelanMcDermidSyndrome from a #NaturalHistoryStudy? The Developmental Synaptopathies Consortium & @Phelan_McDermid share more about the study and what it's like to participate: rarediseasesnetwork.org/news/impact-fe…
.@rarediseasesnet research has furthered our understanding of why prednisone doesn’t work for all #MyastheniaGravis patients. By focusing on blood metabolites, researchers can create personalized treatments that cater to patient needs: go.nih.gov/RKPUWMP
New research from the Consortium of #Eosinophilic #Gastrointestinal Disease Researchers (CEGIR): ✅ Investigating the Progression of #EosinophilicEsophagitis Variants Over Time Listen and read more: rarediseasesnetwork.org/news/research-…
Investigating the Characteristics of #NaturalKillerCells in Patients with #Autoantibody-Mediated #Autoimmune Diseases New in @J_Immunol from @MGNet__: journals.aai.org/jimmunol/artic…
Highlight reel from our recent scientific and family conference youtu.be/DqRKJL9sZuM?si…
🎙 New podcast episode! ➡️ Examining #Psychosocial Outcomes of Pain and #PainManagement in Adults with #OsteogenesisImperfecta Listen and subscribe: spreaker.com/episode/bbdc-e…
First-authored this paper in my gap year before medical school. Had an awesome experience with Dr. Shy's CMT research group. #neurology #CMT
First-authored this paper in my gap year before medical school. Had an awesome experience with Dr. Shy's CMT research group. #neurology #CMT
Listen to a few of our CEGIR colleagues in this podcast - podcasts.apple.com/us/podcast/eos…
Exploring the #Neurological Characteristics of #PMM2CDG (#CongenitalDisorderOfGlycosylation) Using Human In Vitro Neural Models New in @CellReports from @FrontierCDG: cell.com/cell-reports/f…
Rare Disease Day at NIH 2024 may have passed, but our commitment to the community continues! Read an @NIHRecord story about the inspiring journeys of #RareDiseases patients & caregivers, scientific discoveries, impactful community programs & more: go.nih.gov/GWW2ee1 #RDDNIH
Our #RareDiseases Clinical Research Consortia are intended to advance and improve diagnosis, management, and treatment of numerous, diverse rare diseases through highly collaborative, multi-site, patient-centric, translational, and clinical research. rarediseasesnetwork.org/news/rdcrn/202…
New research from the Clinical Research in #ALS and Related Disorders for Therapeutic Development (@CReATeRDCRN) Consortium: ✅ Temporal Course of Cognitive and Behavioral Changes in #MotorNeuronDiseases Listen and read more: rarediseasesnetwork.org/news/research-…
📣 We are seeking innovators to join our dynamic team! Current #JobOpenings include: ✅ Bioinformatician ✅ Staff Scientist ✅ Program Officer ✅ and more! go.nih.gov/QY9r3td
A new pilot study led by Justin Leach, PhD, of @UABNews, aims to improve #ClinicalTrials for #MyastheniaGravis by incorporating the impact of emergency therapy. @MGNet__, @ConquerMG, and @MyastheniaOrg are collaborating to support the project. Read more: rarediseasesnetwork.org/news/consortiu…
Apply for a new #FundingOpp by Aug. 13, 2024! The opportunity invites applications for the Rare Diseases Clinical Research Consortia (RDCRC), which aim to improve diagnosis & treatment for people with #RareDiseases: go.nih.gov/AnCUy6j @rarediseasesnet
The objective of this Notice of Funding Opportunity (NOFO) is to invite new and renewal applications for the #RareDiseases Clinical Research Consortia (RDCRC) that comprise the Rare Diseases Clinical Research Network (@rarediseasesnet). Learn more: ncats.nih.gov/research/resea…
New research from the #BrittleBone Disorders Consortium (BBDC): "Examining #Psychosocial Outcomes of Pain and #PainManagement in Adults with #OsteogenesisImperfecta" Listen and read more: rarediseasesnetwork.org/news/research-…
Rare Disease Day @rarediseaseday
44K 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
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
Effie Parks @OnceUponAGene
5K Followers 3K Following Nuclear Advocate | Award Winning Podcaster | Speaker | Captain Connection | #RareDisease #RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Luke Rosen @lukebrosen
2K Followers 432 Following Dad of 2 amazing kids. Founder of https://t.co/M8dxuYqmgL. Works with families affected by rare neurological diseases and cancer. Baseball and hockey. Firefighter.
EJP RD - European Joi.. @EJPRareDiseases
4K Followers 2K Following #EJPRD - European Joint Programme on Rare Diseases | RTs shares likes ≠ endorsement
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
yoni יוני @Primary_Immune
41K Followers 27K Following Human being. Jew. Israeli. Primary Immunodeficiency patient. הודו לה׳ כי טוב כי לעולם חסדו #Immunology #raredisease #ISRAEL
Orphanet @Orphanet
6K Followers 625 Following The reference portal and knowledge base for information on rare diseases and orphan drugs. Orphanet nomenclature, ORPHA codes, Orphanet RD Ontology @inserm
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Genetics in Medicine @GIMJournal
16K Followers 3K Following Genetics in Medicine, an official journal of @TheACMG Site use policy: https://t.co/gMGoSv2TJY. Cover Photo: Bridge over the Ure by Peter Freeman
Amy Gaviglio @agavig
497 Followers 350 Following Founder, Connetics Consulting | Genetic Counselor | Public Health Genetics/Rare Disease Consultant. Lover of challenging discourse. Tweets are mine.
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
January Payne @januarypayne
1K Followers 2K Following Health communicator. Health equity advocate. Former health/medical journalist @washingtonpost @usnews. Dog mom. 🐶🐩🐕 Opinions are my own.
A/Prof Jodie Ingles @jodieingles27
8K Followers 3K Following Head, Clinical Genomics Lab | Program Director, Genomics & Inherited Disease @GarvanInstitute | Cardiac Genetic Counsellor | Swiftie | Opinions my own
PaddyNenagh @PaddyNenagh
2K Followers 4K Following Retired Uni Tutor (History). Huge fan Luke Kelly & Iris Dement. Diagnosed Myasthenia Gravis. RTs not necessarily endorsements. Kindness is the mightiest force..
Spencer Pyles @PylesSpencer
212 Followers 782 Following
машмаш @godmasha
35 Followers 185 Following
Nerve Tumours UK @NervetumoursUK
2K Followers 745 Following Formerly “The Neuro Foundation”. We fight to support those living with conditions that cause nerve tumours. T: 0208 439 1234
BANANEZA Roméo 777 @bananeza777
179 Followers 482 Following Research| peer reviewer| Director of Project Management | Global Health Emerging Leader | Global Youth Ambassador | Clinical Medicine | community health
Anil Rajani @anil_rajani
292 Followers 3K Following Movie enthusiast... But strictly Bollywood only... Fully filmy... Chocolate lover... Salman khan fan... Pharming for living...
Lorena Birriel @LBirriel
40 Followers 525 Following
Udinahmad @udinahmadaja
1 Followers 65 Following
Jennifer Brown @jjunebrown
24K Followers 16K Following Indie author, public health advocate, genetics PhD. Creatively driven, scientifically inspired. Mom of 2 with the rare health condition PKU.
Stephanie Burgess @steph_rules
188 Followers 1K Following I have Behcets Disease, amongst other illnesses. I hate discrimination. I dream of travelling. I love my friends and family! SIMPLES!! xx
Denville Partners @denvillepartner
396 Followers 2K Following #Executivesearch firm focused on supporting clients in Biotechnology, Pharmaceuticals, and industry related nonprofits.
db @db7738312670620
10 Followers 31 Following
Focus On Sickle Cell .. @UgandaSickle
250 Followers 1K Following FOSCA exists to provide a multi-faceted approach to combating SCD that includes testing, research, raising awareness, and providing psychosocial support.
is believing ... @isbelieving
726 Followers 2K Following Chronic Inflammatory Demyelinating Polyneuropathy Multifocal Motor Neuropathy Guillain-Barre Syndrome #MMN #GBS #CIDP #peripheralneuropathy #Autoimmune #MS
Αρίσταρχος @Apiotapxoc
96 Followers 190 Following
Teri Miessner @nelipotgypsy_46
65 Followers 144 Following Creative and analytical, Type A, advocating for #RARE, #MPN, #MGUS , #HEDS, CYP2D6 Poor Metabilizer, PI, Menieres, Neurosarcoidosis. Hubby Gary & Scooby mom.
Nanoscope Therapeutic.. @NSTherapeutics
1K Followers 504 Following Innovative therapies in the realm of vision restoration
ClinRheumatol @ClinRheumatol
7K Followers 3K Following Clinical Rheumatology - Journal of the International League of Associations for Rheumatology 2022 Impact Factor: 3.4 Editor-in-Chief: Prof. Adewale Adebajo
FormusPro @FormusPro
75 Followers 338 Following OotB and bespoke business focused software solutions such as: #MicrosoftDynamics365, #CRM and #ERP, #Azure, #PowerPlatform #ClickDimensions and much, much more.
Global MedCon @GMedCon
2 Followers 30 Following Global MedCon is your Expert Consulting Partner in Medical Technology, Lifesciences, Genetics, Clinical & Market Research and Regulatory Solutions.
Hasti @Hasti0307
0 Followers 28 Following
JARDIN_Joint-Action @jardin_EU_JA
89 Followers 131 Following JARDIN is created to improve the accessibility of the ERNs for people living with rare diseases or complex conditions in EU member states.
aboturki @abuturki34
117 Followers 514 Following
Maged Hosney Alansary @MagedHosney_MD
23 Followers 228 Following
I am not detached! @DivoonehD
81 Followers 197 Following looking for #woman_life_freedom # جمهوری خواه برای ایرانی نوین فارغ از شاه و ولی فقیه
Caroline Ready @JeffsCaroline
140 Followers 662 Following
Krish Dasgupta @officialKrishD
880 Followers 4K Following Forever Learner | Building Reinforcement Learning Systems | Healthcare | Robots and Brains | Graph ML for Health
Deborah Costa @deborahhcostamm
15 Followers 250 Following mãe do Davi, autista com alteração genética rara #CACNA1C
LutraLutra @lutra2602
34 Followers 137 Following
BioL-BioS 2024 @BioLBioS2024
4 Followers 364 Following 5th Euro-Global Summit on Future of Biologics and Biosimilars
Manchester Rare Condi.. @mft_iMRare
602 Followers 234 Following Official Manchester Rare Conditions Centre account. Improving lives of people with rare conditions
Owoeye David @davoshalom
771 Followers 2K Following God Lover. Infection Prevention & Control Specialist. Sickle Cell Warrior & Advocate. Author. https://t.co/9z1lvAfJYh…
foldercase @foldercase_com
1K Followers 2K Following New platform helping you manage your research and data // collaborate and organize academic networks // advance open science 👉 join us
AnthongLu @AnthongLu99
5 Followers 55 Following
Mike @mike286347
87 Followers 5K Following
UCR Office of Researc.. @ucr_ori
281 Followers 565 Following The Office of Research Integrity provides oversight, resources & education for integrity and compliance issues relating to the conduct of research at UCR.
CERPOHCHI @cerpohchi
26 Followers 367 Following 1° Congreso de Enfermedades Raras, Poco Frecuentes y Huérfanas que se realizará del 13 a 15 de noviembre próximo en 🇨🇱. Más información en: [email protected]
Chromocell @ChromocellThera
30 Followers 114 Following Chromocell is a biotechnology company developing & commercializing novel, non-opioid, non-addictive therapeutics to alleviate pain & associated conditions $CHRO
Annu Zerin @zerin_annu
6 Followers 85 Following
SHANTANU SENGUPTA @SHANTAN03364656
110 Followers 2K Following
Señorita Isa 🌟�.. @isitacana1
70 Followers 473 Following TP53 Reina de las hadas del bosque/emperatriz buscando su imperio Drag´s name: Ivy Ice Amante del glutamato monosódico
Dr. Divya Sunil @DivyaSunil61359
0 Followers 19 Following Dentist, Content creator and Academic Mentor
Rare Disease Day @rarediseaseday
44K 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
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
National Human Genome.. @genome_gov
81K Followers 447 Following Funding research at the forefront of genomics to improve human health. Formerly the Human Genome Project. https://t.co/4hdQRFkFNU
EveryLife Foundation @EveryLifeOrg
7K Followers 3K Following Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
Stephanie Fischer @RarePOV
7K Followers 6K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
yoni יוני @Primary_Immune
41K Followers 27K Following Human being. Jew. Israeli. Primary Immunodeficiency patient. הודו לה׳ כי טוב כי לעולם חסדו #Immunology #raredisease #ISRAEL
Rare Disease UK @rarediseaseuk
22K Followers 2K Following National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
Unique @Unique_charity
8K Followers 2K Following Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. https://t.co/GkIBlYg5c5
NCATS @ncats_nih_gov
16K Followers 702 Following Official account of @NIH's National Center for Advancing Translational Sciences. Privacy Policy: https://t.co/f5qzfKqqaR engagement ≠ endorsement
David Fajgenbaum, MD @DavidFajgenbaum
11K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
CORD @raredisorders
5K Followers 729 Following CORD Mission: Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.#Canada4Rare
CheckRare @CheckRare
3K Followers 2K Following Leading publisher and learning platform focused on rare diseases. Rare Diseases Are Our Focus, Expertise, and Passion.
SWAN UK (syndromes wi.. @SWAN_UK
9K Followers 4K Following SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
NIDCR @NIH @NIDCR
10K Followers 2K Following Official Twitter account of National Institute of Dental & Craniofacial Research, part of @NIH & lead federal agency for oral health research.
Cincinnati Children's.. @CincyKidsHeart
2K Followers 1K Following The Heart Institute at @CincyChildrens - Sharing patient stories, groundbreaking research, community partnerships, and latest news as it happens!
Cincinnati Children's.. @CincyKidsMedArt
591 Followers 940 Following We're a team of artists that produce medical visual aids @CincyChildrens- 2D Illustration, 3D Modeling, Animation, 3D printing, +more. Est.2009 #MedEd #SciArt
NINDS @NIH_NINDS
13K Followers 111 Following Official account of the National Institute of Neurological Disorders and Stroke (NINDS), part of the @NIH Privacy Policy: https://t.co/IHhFTL1pRp
FDA Biologics @FDACBER
24K Followers 215 Following Latest information from the Center for Biologics Evaluation and Research. Contact us at 1-800-835-4709 or [email protected]. http://t.co/5Fo6rzyhYQ
FDA Patient Affairs @FDAPatientinfo
4K Followers 108 Following The FDA's Patient Affairs office covers a range of FDA-specific topics and conducts numerous activities that are of interest to patients.
Andrea Gropman @AndreaGropman
428 Followers 574 Following Chief, Neurogenetics Children’s National Hospital, Professor of Pediatrics, Neurology, Genomics and Personalized Medicine, Brain imager, Screen play writer, mom
Global Leukodystrophy.. @wearetheglia
18 Followers 7 Following The Global Leukodystrophy Initiative is an international research consortium working to identify novel diagnostic tools and therapies for leukodystrophies.
Dr Katherine Forsey @DrBiol
3K Followers 4K Following Chief Research Officer | Charcot-Marie-Tooth Association @CMTAusa #CMTASTAR #CMTresearch CSciTeach | STEM Ambassador
National CMV @NationalCMV
2K Followers 3K Following 1 in 200 children is born with congenital CMV. NPO raising awareness of the leading viral, preventable cause of birth defects, developmental disabilities.
LDN @ldned
26 Followers 1 Following The Lysosomal Disease Network (LDN) is a lysosomal diseases research consortium under https://t.co/F7gAYXa09o, funded by the NIH.
NINDS Office of Resea.. @NINDS4Rigor
520 Followers 401 Following Official account of NINDS/ORQ, part of @NIH We promote rigorous research practices and transparent reporting RTs ≠ endorsements Privacy Policy: https://t.co/0eBQVXO77H
CHOP Research @CHOP_Research
6K Followers 617 Following At the Children's Hospital of Philadelphia Research Institute, we advance the health of children by turning scientific discovery into medical innovation.
Marrah Lachowicz-Scro.. @LachowiczMarrah
1K Followers 3K Following Program Director NHLBI: cilia/mucus, CF, PCD, gene therapy tech, women's health, COVID/PASC. Any opinions expressed are my own not the views of my employer.
Andrew Edmondson 🏳.. @CDG_MDPhD
635 Followers 1K Following Assistant Professor @ChildrensPhila @Penn MD/PhD ‘13 Clinical Biochemical Genetics/Pediatrics. Opinions my own. He/him. #FCDGC #CDG 🌈
Cincinnati Children's.. @CincyKidsInvent
356 Followers 594 Following Tech Transfer | Commercialization | Ventures @CincyChildrens. Promoting science, inventors and partners like you. Follows ≠ endorsement.
The Jackson Laborator.. @jacksonlab
22K Followers 7K Following Est. 1929, JAX is a non-profit scientific research institute specializing in 🧬 genetics, 🧮 genomics & 🐁 mouse models of disease. https://t.co/SrWBTGUJ00
JoniRutter @jonirutter
464 Followers 416 Following Director, @ncats_nih_gov. #WomanInScience and Kansan. Advocate for science and improving health for all. Drone, 🔭, and nature hobbyist. Views are mine.
Don Vinh @DonaldVinh
8K Followers 514 Following Infectious disease MD. Medical Microbiologist. Clinician-Scientist (Inborn Errors of Immunity). Clinical section head (ID-Heme/Onc/Transplant). FellowCIS. FIDSA
Reena Kartha @rvkartha
214 Followers 321 Following #RareDisease Translational Pharmacology Researcher @UMN_Pharmacy, Center for Orphan Drug Research, views my own
Amour Fund @AmourFund
64 Followers 58 Following Amour means ‘Resilient’ in Armenian and ‘Love’ in French. Our goal is to find a cure for Congenital Disorders of Glycosylation (#PMM2CDG), #CureCDG #RareDisease
Myasthenia Gravis Rar.. @MGNet__
14 Followers 5 Following MGNet is a consortium of academic centers & patient advocacy groups with mission to enhance therapeutic development and research for Myasthenia Gravis
From the Labs at Bayl.. @BCMFromtheLabs
6K Followers 6K Following From the Labs at Baylor College of Medicine spotlights the newest and most interesting research information from the bench at the College.
Kara Ayers @DrKaraAyers
5K Followers 5K Following Professor, Researcher, Writer, Speaker, & Proud Mom & Wife with Osteogenesis Imperfecta. Director @ThinkEquitable - Striving for change|Views are mine.
Chaya Nautiyal Murali @chayasays
751 Followers 1K Following Essayist, geneticist, QoL/PRO researcher. Tweets my own opinion. Work in @asterixjournal, @barelysouthr, @SFWP, and elsewhere. Working on a collection. She/her.
Center for Disability.. @ThinkEquitable
1K Followers 320 Following To identify and reduce life-limiting inequities in healthcare, community living, and justice for people with disabilities.
Therapeutic Advances .. @TARareDisease
631 Followers 1K Following A SAGE gold open access journal | Publishing high-quality articles in the field of rare disease | Launched in 2020 | Editor @Urvalind | #TARareDisease
UDN PEER @UDN_PEER
257 Followers 98 Following The UDN Participant Engagement and Empowerment Resource (PEER) group supports participants and family members enrolled in the Undiagnosed Diseases Network.
Cincinnati Children's.. @CincyInformatix
1K Followers 611 Following Division of Biomedical Informatics @CincyChildrens. Committed to improving health outcomes through the innovative application of biomedical data & informatics.
Michael Seid @michaelseid11
1K Followers 410 Following Inventing the future of health care. Social/behavioral scientist. find me on the not-bird site @[email protected]
Cincinnati Children's.. @CincyKidsDBE
190 Followers 206 Following Division of Biostatistics and Epidemiology @CincyChildrens. Strengthening pediatric research in #biostatistics, #epidemiology, and #ClinicalData management.
Tim Bonfield @TimBonfield
539 Followers 928 Following A dad, a writer at Cincinnati Children's, a citizen living the dream. Opinions my own. Also find me @timbonfield@threads.
Tiina Urv @Urvalind
46 Followers 69 Following
Urea Cycle Disorders .. @UCDConsortium
213 Followers 80 Following The UCDC is dedicated to improving the lives of individuals affected by urea cycle disorders. An international collaboration, part of NIH RDCRN @rarediseasesnet
NICHD News @NICHD_NIH
18K Followers 2K Following Official account of NICHD, part of @NIH. Healthy pregnancies, healthy children, healthy & optimal lives. Engagement≠endorsement
PHEFREE Consortium @PHEFREE_Info
52 Followers 110 Following The mission of the PHEFREE Consortium is to improve the lives of those with #PKU through clinical research efforts across the US #phefreetogether2020
Relapsing Polychondri.. @RP_Organization
1K Followers 2K Following The RP Foundation’s purpose is to facilitate awareness, education, and research to improve the quality of life for patients with relapsing polychondritis (RP).
James Kiley, PhD @NHLBI_LUNGDir
3K Followers 2K Following Official Twitter account of the Director, NHLBI's Division of Lung Diseases, part of @NIH. Privacy/comment policy: https://t.co/NdrTvJqdm9
Coaching & Consulting.. @Dr_CCE
138 Followers 850 Following Refocus. Revive. Repeat. Doctor-Scientist |Board Certified Coach | @ForbesCoachesCouncil |Healthcare Exec Coach & Consultant | Healthcare Leader | #dr_CCE
FCDGC @FrontierCDG
500 Followers 827 Following #NIH consortium fostering collaborative research among researchers, patients and clinicians, for congenital disorders of glycosylation (#CDG). RT/Like≠endorse
CReATeRDCRN @CReATeRDCRN
232 Followers 8 Following CReATe is an NIH-funded clinical research consortium focused on therapy development for ALS and related disorders (PMA, PLS, HSP, FTD, MSP).
Cure GM1 Foundation @CureGM1
269 Followers 27 Following The Cure GM1 Foundation is dedicated to directly funding research for a cure for GM1 Gangliosidosis, a rare disease that is always fatal in children.
ALDConnect @ALDConnect
558 Followers 435 Following Consortium of advocates and experts advancing care for #adrenoleukodystrophy (#ALD) and #adrenomyeloneuropathy (#AMN) through innovation and collaboration.
Bethanys Hope Found. @BethanysHope
379 Followers 34 Following Play Catch the Ace and help us get one step closer to finding the cure (while you take a chance at winning!). 👇🏻💜
Cure MSD @CureMsd
332 Followers 338 Following *NOTE* As of Feb 2024, we are no longer active on this platform, but we invite you to visit @CureMSD on FB, IG, and LI. #TogetherWeCan #CureMSDNCATS offers a wide range of opportunities to work with other research partners to speed up science and support young translational scientists through training. Read how you can get involved: go.nih.gov/dktQxfR
.@rarediseasesnet research has furthered our understanding of why prednisone doesn’t work for all #MyastheniaGravis patients. By focusing on blood metabolites, researchers can create personalized treatments that cater to patient needs: go.nih.gov/RKPUWMP
Are you a researcher interested in the #proteome? Learn more about a series of articles highlighting resources developed by our Illuminating the @DruggableGenome program to facilitate research on #gpcrs #kinases & #ionchannels: go.nih.gov/E8cbSGH
Call out an advocacy group, organization, or person who has made a positive impact on your #RareDisease journey! ⬇️
Highlight reel from our recent scientific and family conference youtu.be/DqRKJL9sZuM?si…
First-authored this paper in my gap year before medical school. Had an awesome experience with Dr. Shy's CMT research group. #neurology #CMT
New research from our Inherited Neuropathy Consortium and @IowaNeurology: Loss of function MPZ mutation causes milder CMT1B neuropathy onlinelibrary.wiley.com/doi/10.1111/jn… #CMT #CMT1B #CharcotMarieTooth #neuropathy
The latest edition of DYSTONIA ADVOCATE the newsletter of Dystonia Ireland dystonia.ie/wp-content/upl… @dystoniaeurope @naiireland @Dystonia_Res #Dystonia #DystoniaAwareness @Neurology #MovementDisorders @svuh @dni_neurology @RareDiseasesIE @HRCIreland @rarediseasesnet @rare_trial
Stay connected with us! 📧 Subscribe to the NCATS Stakeholder Listserv and get the latest #TranslationalScience updates and insights. go.nih.gov/5Wt79XC
Listen to a few of our CEGIR colleagues in this podcast - podcasts.apple.com/us/podcast/eos…
The *NEW* @rarediseasesnet NOFO is out. @nih_nhlbi is participating for #heart, #lung, #blood and #sleep rare diseases and conditions. grants.nih.gov/grants/guide/p…
Rare Disease Day at NIH 2024 may have passed, but our commitment to the community continues! Read an @NIHRecord story about the inspiring journeys of #RareDiseases patients & caregivers, scientific discoveries, impactful community programs & more: go.nih.gov/GWW2ee1 #RDDNIH
All week long our @Pratt_Library has been celebrating #NationalLibraryWeek with open houses for our employees, chances to meet our librarians, giveaways & more! As one of the most extensive pediatric library collections, learn more about our Pratt Library: cincinnatichildrens.org/research/suppo…
📣 We are seeking innovators to join our dynamic team! Current #JobOpenings include: ✅ Bioinformatician ✅ Staff Scientist ✅ Program Officer ✅ and more! go.nih.gov/QY9r3td
Apply for a new #FundingOpp by Aug. 13, 2024! The opportunity invites applications for the Rare Diseases Clinical Research Consortia (RDCRC), which aim to improve diagnosis & treatment for people with #RareDiseases: go.nih.gov/AnCUy6j @rarediseasesnet
Do you have a rare health condition that doctors struggle to understand? Have you been waiting years for a diagnosis? #undiagnosedDay is this month on April 29. Share your #undiagnosed story with NORD for the chance to be featured and educate others: bit.ly/3zTnxdf
Rowan’s special low-protein diet is needed due to a #raredisease called phenylketonuria, or #PKU. Watch @WCCO to see how we’re helping the family navigate care while they advocate for new legislation to address insurance coverage for medical foods. ➡️ bit.ly/4aAcgPj
Join us for engaging discussions on the latest health topics impacting kids today. Listen to our Young & Healthy podcast to discover information on lots of topics, like kids gut health, bedwetting, & concussions, just to name a few: youngandhealthy.podbean.com. #CincyKidsYoungHealthy
📢 Calling patient groups in the #RareDiseases community! Share your resources to help other patient group leaders get started with research. Selected resources will be included on the NCATS Toolkit website. Learn how to submit: go.nih.gov/ehRz9yQ 1/2
Thanks to the @EveryLifeOrg for organizing Rare Disease Week on the Hill! Advocates — including those with MG like Siobahn — are making a difference. Read about her experience at the #MGFA blog: ow.ly/ahlg50QWZcJ #RareDiseaseWeekOnTheHill
In the Spotlight: Imagine a day when lab-made mini-organs—called organoids—could serve as an alternative source for organ transplants. Learn how our @CuSTOMOrganoids experts are advancing organoid technology to help make this a reality, @ScienceMagazine: science.org/content/articl…
Trends for United States
You might like
