Search results for #RareDiseases
Alliance CEO @SuePeschin spoke at #WorldOrphanUSA on the patient impact of FDA's Accelerated Approval Program alongside experts from EveryLife Foundation, Johnson & Johnson, and The Center for Medicine in the Public Interest. #WorldOrphanUSA #rarediseases #rarediseasecommunity
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👀 Looking for reliable information on #RareDiseases? Our Genetic and Rare Diseases (#GARD) Information Center is a #PublicHealth resource that provides free access to easy-to-understand information in English and Spanish. Learn more today: go.nih.gov/0ii0t8Q
Gene-based therapy restores cellular development and function in brain cells from people with Timothy syndrome - please check the link for more information ow.ly/zOAw50RofEf @NIMHgov #RareDiseases #TimothySyndrome #Neuroscience #BrainFunction
Thank you Dr @rileyphil for inviting us to this exclusive post-conference dinner talk at such a beautiful venue! Very inspiring, good vibes today💫 #BSR24 #paediatrics #rheumatology #SOBI #rarematters #RareDiseases
Testicular maldescent in infertile men may be a sign of more severe cases of congenital RASopathy syndromes - check the link for more ow.ly/HbH750RogyW @researchestonia @unitartu #RASopathySyndromes #Infertility #MedicalResearch #RareDiseases #Healthcare
Jana's family's story is a testament to the power of #DNA and the life-changing need for early diagnosis and treatment of #RareDiseases via newborn screening. Read more about Jana Monaco and all of our 2024 NORD #RareImpactAwards Honorees: rareimpact.org #DNADay
As a NORD #RareActionNetwork Ambassador, Jana Monaco fought to make sure Virginia screened newborns for as many #RareDiseases as possible. Now, the number of conditions Virginia screens for went from just 8 to 33 and counting! This had personal repercussions for Jana's family...
Why do #patients & family caregivers love the tips in the ZaggoCare Guide? Download free sample pages to see why! bit.ly/371c80b #Cancer #ALS #MS #Parkinsons #COPD #Diabetes #HeartDisease #RenalFailure #KidneyDisease #OrganTransplants #LiverDisease #RareDiseases #TBI
Today is #NationalDNADay, commemorating the completion of the Human Genome Project. Did you know 85% of #RareDiseases are genetic? That's why we need to understand our DNA. Watch this video on genetic testing for rare and undiagnosed disorders: youtube.com/watch?v=-w1ZpW… #DNADay
New gene therapies for rare diseases The challenge? Predicting long-term success. Our research offers a faster way to know, using early-trial data! Positive outlook for Hemophilia B patients! #genetherapy #rarediseases #precisionmedicine lnkd.in/g2aaaA2i
One of the 3 new European #research projects will be led by our Chief of Clinical Nephrology & well-known #RareDiseases expert Dr. @torra_roser @ERAkidney. 🎯The aim: to provide keys toward future personalized therapies for autosomal dominant tubulointerstitial #nephropathy
One of the 3 new European #research projects will be led by our Chief of Clinical Nephrology & well-known #RareDiseases expert Dr. @torra_roser @ERAkidney. 🎯The aim: to provide keys toward future personalized therapies for autosomal dominant tubulointerstitial #nephropathy
Champions in Miami 2024 #RareDiseases #MedicalScience #FragileXSyndromeAcceptance #FragileXSyndromeAwareness #FragileXSyndromeCommunity [Video] Hosted by the Finazzo Family, this gala is not just an exquisite gathering; it serves as a significant source… dlvr.it/T60mLd
Researchers at Baylor College of Medicine are employing artificial intelligence to streamline the diagnosis of rare Mendelian disorders - please check the link for further information ow.ly/pzIb50Ro3eA @bcmhouston #RareDiseases #MendelianDisorders #AI #HealthTech
According to @genome_gov, 80% of #RareDiseases have a #genetic component, meaning that changes to #DNA are the cause. Currently, the #SimonsSearchlight gene list contains 162 gene changes and 24 copy number variants that cause rare neurodevelopmental disorders. #NationalDNADay
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 Diseases IORD @rarediseases_in
344 Followers 110 Following Indian Organisation for Rare Diseases (IORD) is a not-for-profit umbrella organisation with presence in India & USA, working for all rare disease stakeholders.
RareDiseases Journal @RarediseasesJ
325 Followers 316 Following Journal of Rare Diseases Research & Treatment is aiming to remain as a credible source of information on rare diseases and orphan drugs
Lorna Speid, Ph.D. Pr.. @rarediseases1
136 Followers 283 Following Dr. Lorna Speid is trained in the safety assesment of medicines. She works in the pharmaceutical industry in the field of regulatory affairs. She is an author.
Cavidan Soykan 🔜 c.. @cavidansoykan
8K Followers 2K Following Human rights, migration and gender I #rarediseases #ableism Insan hakları, göç | #nadirhastalıklar #sağlamcılık MA @sbfihm PhD @essexsociology Fellow @SPGSKeele
Mereo BioPharma @MereoBioPharma
618 Followers 112 Following Mereo is a clinical-stage company focused on developing therapies in oncology & #orphandrugs / #rarediseasetherapies for #rarediseases
GeneMAP Research Cent.. @GeneMAPOfficial
2K Followers 79 Following Genetic Medicine of African Populations (GeneMAP) Research Centre. #Genetics #Genomics #Rarediseases #hearingimpairment #SickleCell; #Ethics, #CapacityBuilding
Rare diseases @Rarediseases3
10 Followers 5 Following
RAREVOLUTION @stoprare
425 Followers 14 Following #RAREvolution: Join the @react_community, a knowledge sharing and crowdfunding platform dedicated to support research on #rarediseases.
Rare Disease Day US @RareDayUS
8K Followers 1K Following 2/28/19. #ShowYourStripes & join the movement in the US & around the world for #RareDiseaseDay. (Hosted in the US by @RareDiseases.)
Rare Disease Review @RareDRev
2K Followers 290 Following The Medical Journal That Anyone Can Understand. Leader in #rarediseases & #knowledgetranslation. #zebrastrong
BLACKSWAN FOUNDATION @BLACKSWANFound
2K Followers 417 Following Foundation supporting Research on #RareDiseases and #OrphanDiseases world wide @REACT_Community #RAREvolution #REACTCongress
Rare Action Network @RareAction
3K Followers 301 Following Advocating at the state & federal level to improve the lives of the 30 million Americans with #RareDiseases. #RareAction: a #NORD (@RareDiseases) initiative.
RareDiseases.. @in_rare
87 Followers 67 Following
Oman Rare diseases @rarediseases_om
30 Followers 15 Following حساب مجموعة الدعم الأسري للأمراض النادرة تحت مظلة وإشراف جمعية التدخل المبكر للأطفال ذوي الإعاقة The acount of Family support group for rare diseases
Rare Diseases @CheckOrphan
18K Followers 5K Following CheckOrphan is the leading #news and information platform dedicated to #rarediseases and #orphandrugs
Samir Gupta @SammyG_MD
6K Followers 479 Following Clinician-Scientist + Respirologist. Into: #KnowledgeTranslation #eHealth #RareDiseases #BBoy4Life #Bollywood. #Science communication: making science obvious…
Rarediseases aka Fric.. @RFrickles60038
1 Followers 5 Following We support people with Frickles so that they never feel left out and they must always portray their beautiful faces☺️
ArcturusRx @ArcturusRx
1K Followers 489 Following We are a global messenger RNA medicines and vaccines company #Arcturus #ArcturusRx #mRNA #Vaccine #Covid19 #Rarediseases $ARCT
Rare Sibling @RareSiblings
225 Followers 20 Following Il Progetto di @OssMalattieRare dedicato ai fratelli e alle sorelle dei malati rari | #RareSibling #RareDiseases #MalattieRare
Debjani Chowdhury @Save_Arian
1K Followers 154 Following Arian, our only child has Hunter Syndrome (MPS-II),a rare, genetic and terminal disease. Here to raise awareness about MPS and other #RareDiseases #SaveArian
Nuno Raimundo @nunoraimundo
2K Followers 634 Following scientist #mitochondria #lysosomes #organelle #crosstalk #metabolism #rarediseases #inbornerrosofmetabolism #Benfica
EveHooley @Hooleyeve
601 Followers 162 Following Live life - Love life ❤️ Make Memories #OrganDonation #BloodDonation #CFS #ASD #MuscularDystrophy #Lipodystrophy #RareDiseases #ComplexNeeds #MyGirlsMyWorld
FIRENDO @FIRENDOFrance
541 Followers 149 Following Filière #santé #maladiesrares (@FilièreMR, #FSMR) endocriniennes, pilotée et financée par le @Sante_Gouv, avec le siège à @HopitalCochin, Paris. #rarediseases
Rare Disease India @raredisease_in
590 Followers 213 Following 70 million Indians suffer from #RareDiseases. #Genomics offers them a new #hope.
Dr Thierry Cardon @Docrhumato
6K Followers 5K Following Sensibiliser au diagnostic précoce des maladies rares #rarediseases #rheumatology #ethic #literature #pain #immunology #muscledisease #IA #chess #atdqm
Saba Foundation for R.. @sf_rarediseases
6 Followers 29 Following SFRD-an Umbrella Org., strives to provide support to All Rare Disease Patients in India thru Edu. & Empowerment; Advocacy for National Policy for Rare Diseases
Dave Tang @davetang31
2K Followers 383 Following Researcher and blogger interested in #bioinformatics #genomics #singlecell #rarediseases #rstats. Created @transcriptomes :wq
VASCERN @vascern
2K Followers 636 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
RARE’ingToGo 🧡�.. @Dphillips2112
1K Followers 1K Following #Guardians #Browns #CRPS Complex Regional Pain Syndrome #PMBCL Primary Mediastinal B Cell Lymphoma #BreastCancer #RareDiseases #SafeSupply #HarmReduction
Yue Lab at Newcastle @TheYueLab
1K Followers 695 Following Prof Structural Biology @nubiosciences, @UniofNewcastle; formerly at @cmdoxford; all things metabolic enzymes, complexes, #rarediseases. Views my own.
Soligenix, Inc. @Soligenix_Inc
902 Followers 308 Following Developing life-saving products and #vaccines for inflammatory #diseases, #rarediseases and #biodefense. $SNGX
RespiFIL 🫁 @RespiFIL
1K Followers 709 Following Filière de santé des maladies respiratoires rares #maladiesrespiratoiresrares #maladiesrares #filieredesante #rarediseases #FSMR *officiel🐦*
George Goshua, MD MSc @GeorgeGoshuaMD
845 Followers 470 Following Hematologist @Yale | Ed Board @AnnalsofIM |'22 @HarvardChanSPH & @YaleHemOnc | #immunohematology #decisionscience #equity #econ #rarediseases🇬🇪🇨🇦🇺🇸
Share4Rare @Share4Rare
2K Followers 997 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
Open Health Network @OpenHealthN
2K Followers 2K Following #GenAI & #AI in Healthcare #DigitalTwin #DigitalTwins #NLP #BigData #cardiology #oncology #rarediseases #autism #chronicillness #diabetes & more
Encarna Guillén @encarna_guillen
7K Followers 4K Following Pediatra, Genetista Clínica @AreaUnoArrixaca @murciasalud @UMU @IMIB @CIBERER @AEGHgenetica #RareDiseases
Bomont Pascale @PascaleBomont
588 Followers 261 Following Neurobiologist fascinated about the cellular processes underlying neurodegenerative diseases; #cytoskeleton #autophagy #Shh #rarediseases #zebrafish
Biotherapies_Inst @BiotherapiesIns
829 Followers 512 Following Biotherapies Institute, by AFM-Téléthon (@AFMPresse), to develop treatments against #RareDiseases.#genetherapy #celltherapy https://t.co/6bkTWpst6i
Ertugrul Cagri Bolek,.. @Ertugrul_cagri
957 Followers 1K Following ECB®️|#Calligraphy| #Translational | #Rheumatology & #Immunology| #Vasculitis |#RareDiseases| GR @NIH_NIAMS | #HacettepeUniversity| @EMEUNET WG| #ACRAmbassador
Safiye @_safiyegnc
337 Followers 217 Following Human-Geneticist 🧬 PhD’ing @UCTHealthSci. #NextGenerationSequencing #RareDiseases Seeking #mutations causing colorectal cancer in #SouthAfrican populations.
José Álvarez 🎏 @Gomecello
1K Followers 768 Following Biologist | Environmentalist | Birder | Fighting #RareDiseases such as #Sanfilippo syndrome #Mucopolisacaridosis @StopSanfilippo
RARE_DISEASES @RAREDISEASES4
4 Followers 0 Following RAREST DISEASES IN THE WORLD| WEDO NOT OWN THE CONTENT WE POST
Sean Ekins @collabchem
3K Followers 2K Following #PhD, #DSc, CEO @Collabpharma, #WinningGrants #RareDiseases #BattenDisease #ML #AI #DualUse https://t.co/iWTou5LwJE… #Jazz #UnknownKillerRobots #DrugDiscovery
Ricardo Mondragon-Gon.. @RicMG90
1K Followers 2K Following 🇲🇽Senior scientist @Sanofi. Mentor at @UNAM Muscular diseases #rarediseases. Opinions are my own
RASopathies Network @RASopathiesnet
1K Followers 1K Following A 501.c.3 organization; Our mission is to advance research of the #RASopathies by bringing together families, clinicians & scientists. #rarediseases
Vietnamese Organizati.. @RarediseasesVn
1 Followers 2 Following
Einés Monteagudo @Einesmv
1K Followers 992 Following Neuropediatra en formación. Investigadora en enfermedades raras 📍 @idis_research #PediatricNeurology #RareDiseases
SPANIOS.GR @SpaniosGr
1K Followers 1K Following https://t.co/wvnPrSKzL1 is a voluntary Greek website set up to provide Ιnformation & raise Αwareness ab/ #RareDiseases 🔸fdr @ElinaMiaouli🔸#ΣπάνιεςΠαθήσεις #Υγεία #ΑμεΑ
Augusto Zani @augusto_zani
584 Followers 362 Following Surgeon Scientist @sickkids, studying #ExtracellularVesicles to help babies and children win their battles vs. #CDH, #NEC, and other #rarediseases
Running4Rare @running4rare
657 Followers 351 Following Runners dedicated to raising awareness for #rarediseases while supporting undiagnosed patients. #running4rare
Mary Wang @marywangCM
522 Followers 723 Following Programme Director @rarediseasesint, working on #RareDiseases, global #access; care, diagnosis, medicines. PhD CellBio. My own tweets
Giovanni Stracquadani.. @DrStracquadanio
760 Followers 690 Following Personal Chair #EngBio @SBSatEd. @EPSRC fellow. Co-director @EdinGenFoundry. Founder of @ZytheraBiotech. Working on #AI & #EngBio for #RareDiseases.
Human Genetics UCT �.. @HumGen_UCT
317 Followers 252 Following Official Account for the Division of Human Genetics, University of Cape Town, South Africa #genetics #genomics #rarediseases #research #Africa
EliseCook Foundation @ECFoundation
424 Followers 292 Following Advocacy group for patients and researchers of #RareDiseases. Be a FACE for rare disease: Fundraising, Awareness, Community, Education.
Shahida Moosa #CeaseF.. @shahida_moosa
1K Followers 1K Following Head of Med Genet @ TBH & Assoc Prof of Medical Genetics-passions= #genomics & caring for my patients with #RareDiseases in Africa 🇿🇦🇩🇪🇵🇸 @RareGenomicsRSA
Rare Disease Ghana In.. @RareDiseaseGh
2K Followers 1K Following A nonprofit organisation with the mission to improve the quality of life of persons living with #rarediseases in Ghana. #Awareness #Advocacy #Research #Support.
Carlos Mascías @carlos_mascias
3K Followers 2K Following Médico de Familia+Padre+Directivo en formación+Deportista+Actor frustrado. Mi MISIÓN: CUIDAR #cambiemoselmundo Director Médico en @foundation29feb #rarediseases
D'Genes Asoc. de ER @dgenesmurcia
4K Followers 3K Following D'GENES Asociación de #EnfermedadesRaras #EERR #rarediseases #asociacion
RespiRare @RespiRare_FR
433 Followers 285 Following Centre de référence des maladies respiratoires rares #maladiesrespiratoiresrares #rarediseases #CRMR *Compte officiel*
Francesca Ceradini @franceradini
806 Followers 903 Following Molecular Biologist Science Writer #scicomm #Rarediseases #AdvancedTherapies #patients. Scientific Director @TerapieAvanzate @OssMalattieRare Views are my own
Lena Group Respirator.. @Lena_Group4Resp
806 Followers 2K Following 🫁 Welcome to the account of #Respiratory Projects & Events of Lena Group. We support research & education in #RespiratoryDiseases #Bronchiectasis #RareDiseases
Sam Falsetti @DrFalsetti
2K Followers 2K Following Drug development/ commercialization. Focused on #rarediseases, especially diagnosis/ access to care. Husband/ Father/ Pug owner/ PhD.
DE CARLI Paola @paodecarli
1K Followers 1K Following Directrice Scientifique @Vaincrelamuco #research #cysticfibrosis #rarediseases #patients #accestotreatments #nofakenews #innovation 🇮🇹🇫🇷🇪🇺
Harsha K Rajasimha @Harsharajasimha
1K Followers 2K Following #Entrepreneur #RareDiseases #orphandrugs #decentralizedtrials #PrecisionMedicine #AI #clinicalTrials #Digitalhealth #RWE #clinicalresearch opinions my own
Anna Webb @Anna_Webb
915 Followers 2K Following Work for a medical research charity. Interested in #rarediseases, #outreach, #genomics, #patientengagement, #openscience
Putting RDPF! @PuttingRDPF
1K Followers 2K Following We are a non-profit that provides eactionable information on clinical trials and drug development to patients with rare diseases. #rarediseases
IPIA Ireland @ipiainfo
666 Followers 2K Following The Irish Primary Immunodeficiencies Association (IPIA) supports patients & parents affected by a #primaryimmunodeficiency in Ireland. #PI #rarediseases #PID
Cure and Action for T.. @Tay_Sachs
845 Followers 896 Following Furthering research and supporting families affected by Tay-Sachs and Sandhoff #taysachs #sandhoff #cure #rarediseases #smallcharity #10YearsofCATS
Vanessa Lemarié @VanessaLemarie
584 Followers 882 Following #digitalhealth #rarediseases #telemedicine #AI #lifesciences #intrapreneurship #SHEHealth // works @adahealth // DUS/BER
Corey Carmichael @CarmichaelCorey
286 Followers 237 Following Account Director @SmithSolve working in healthcare with #rarediseases and #biopharma. Business casual on here - anything that passes the several rounds of edits
Observatório de Doen.. @rederaras
265 Followers 609 Following Observatory of Rare Diseases | University of Brasília #rarediseases #doençasraras #enfermedadesraras #divulgaçãocientífica
Andy Hong @AndyHongMD
364 Followers 390 Following #physician #Pediatrics for kids with cancer with a research focus on #cancerresearch #ChildhoodCancer #kidneycancer #RareDiseases
Rachel @RachelGwynn
692 Followers 2K Following Speech & Language Therapist. Londoner. Reluctant runner. Interested in #Epilepsy, #Autism, #ABI, #RareDiseases. Lover of: people, kindness, travel, creativity.
Maureen "virus makes .. @HoatlinLab
761 Followers 1K Following Trained in virology, made vaccines, obsessed with errors of replication & DNA repair, consultant #rarediseases, #datascience, #openscience Tweets mine.
Kim @colormystripes
1K Followers 2K Following Mrs | Retired Certified Interior Design + Social Media Manager | Manny 🐩 | #EDS #CRPS #Fibromyalgia #MCS etc #comorbidities #rarediseases | 👩🏻🦰✝️🦓🔥♿️😷
What DNA test? @whatDNAtest
1K Followers 1K Following News and comments on #genetics, #genomics, #RareDiseases and DNA testing.
Angie Serrano @MAngieSerrano
1K Followers 2K Following #Zebrafish + #BrainOrganoids as #DiseaseModel #RareDiseases • 🧠 +🫀research • 🇦🇷 • She/Her @[email protected]
Eva Bermejo-Sánchez,.. @EvaBS14
1K Followers 1K Following Investigación sobre #EnfermedadesRaras & #DefectosCongénitos, sus causas y prevención / Research on #RareDiseases & #BirthDefects, their causes & prevention
mirumpharma raredisea.. @Mariasssdd127
0 Followers 5 Following
Sagar Vaidya @DrSagarVaidya
181 Followers 152 Following Physician-scientist developing new therapies for #RareDiseases. #GeneTherapy. Tweets are my own. Every child deserves a chance.
Dr Aurora Pujol @PujolLab
765 Followers 2K Following Genomic Medicine to decipher Brain Metabolic Disorders, from diagnosis to therapies #RareDiseases @CIBERER @IDIBELL @Icreacommunity. One Planet. Views my own.
Paul Just @justablo
334 Followers 1K Following Social scientist, researcher @ LBI RUD ethical, legal, social and political aspects of #rarediseases, academic teacher @Political Science Department @univienna
Urh Groselj @UrhGroselj
745 Followers 2K Following Assoc Prof Pediatrics @ukclj & @ULMF_pr | NMEC Member | ex Scholar @Stanford | Emerg Leader @worldheartfed | Advisor @fhpatienteurope | #FH #NBS #rarediseases
Sarah Aladwani @SarahAladwani1
667 Followers 2K Following R&D Bioanalytical, working in Cambridge, MA #RareDiseases #Oncology #BiotechEnterprise @Northeastern alumni “All opinions and views are my own”🇸🇦
Jennifer Huron @JenniferHuron
369 Followers 1K Following Reader, writer, communications, strategy. Passionate about advocacy @rarediseases. Sports enthusiast. Forget cats, the internet was made for corgis.Trends for United States
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