Search results for #rarediseases
#RareDiseases Individually rare collectively common affecting #1in17 people. #GetRareAware @RareDiseasesIE
#RareDiseases Individually rare collectively common affecting #1in17 people. #GetRareAware @RareDiseasesIE
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Our panelists discuss challenges and opportunities for continued innovation, and how policymakers can support their efforts to develop life-changing new treatments for #rarediseases. #neinnovates
Great to be joined by @RepAuchincloss and expert panelists for today’s @NECouncil #NEInnovates program. Thank you to our members @AlexionPharma for sponsoring. #rarediseases
Packed house for our #NEInnovates Tackling #RareDiseases program @seaportboston. Thank you to @AlexionPharma for sponsoring.
.@RepAuchincloss delivers keynote remarks for today’s #NEInnovates Tackling #RareDiseases program.
🔊 Introducing our #RareDiseasesSymposium facilitator Dr. Rita Mutagonda, an advocate for #RareDiseases from #MUHAS, will facilitate on how pharmacists can take a leading role in #RareDiseaseManagement 📅 April 24th, 2024 from 1400hrs. Zoom link🖇️: shorturl.at/ahFP0
🧬💊 #OrphanDrugs are developed specifically to treat #RareDiseases, offering hope and solutions to patients and families often overlooked by mainstream #pharmaceutical development. Get access to cutting-edge information on the orphan drugs market at bit.ly/48FfboH
Cat Lutz, PhD, Vice President of the Rare Disease Translational Center at The Jackson Laboratory, discusses how Jackson Laboratory uses mice in testing for human disease #checkrare #rarediseases checkrare.com/jax-labratory-…
The Enemy Within: University of Basel Study Reveals How Pathogens Spread Unrecognized in the Body - please check the link for more ow.ly/N0yq50RmqHW @UniBasel_en #InfectiousDiseases #medicalResearch #MedicalStudy #RareDiseases #OrphanDrugs
New Paris Brain Institute Gene Therapy for Metachromatic Leukodystrophy Proves Effective in Mice - check the link for more info ow.ly/EBL150RmoML @InstitutCerveau #MetachromaticLeukodystrophy #MLD #Leukodystrophy #GeneTherapy #RareDiseases
From @GlobalGenes : Meredith has been diagnosed with a number of rare and chronic conditions i To read her story on the impact receiving a diagnosis had on her life, click here: go.globalgenes.org/43Sc4ZR #ShareYourStory #CareAboutRare #RareDiseases #RareDiseaseDiagnosis
and innovation. See you there! Click here to register: lnkd.in/gXW2w4jk #WODC2024 #HealthcareInnovation #RareDiseases #AHF
We & our partners at #datavant share a passion for data & analytics. We're excited to announce our new paper, which dives into the transformative potential of #AI & real-world #data in improving the lives of those living with #rarediseases. Read more: hubs.li/Q02tFj__0
Thank you to @RareDiseases for recognizing SpringWorks for developing the first approved therapy for adults with #DesmoidTumors. We look forward to celebrating the advances being made on behalf of patients with #RareDiseases at the #RareImpactAwards in L.A. this June.
Have you ever heard of a condition where sweat becomes blood? It's called Hematohidrosis, and it's one rare and mysterious bleeding disorder. youtube.com/watch?v=ohoiGN… #sweatblood #BloodSweat #HumanBody #RareDiseases #SweatingBlood #HematidrosisAwareness #drkarunakumar
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
326 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
RareDiseases.. @in_rare
87 Followers 67 Following
Mereo BioPharma @MereoBioPharma
618 Followers 112 Following Mereo is a clinical-stage company focused on developing therapies in oncology & #orphandrugs / #rarediseasetherapies for #rarediseases
Lorna Speid, Ph.D. Pr.. @rarediseases1
144 Followers 284 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.
RAREVOLUTION @stoprare
425 Followers 14 Following #RAREvolution: Join the @react_community, a knowledge sharing and crowdfunding platform dedicated to support research on #rarediseases.
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
Rare Disease Review @RareDRev
2K Followers 290 Following The Medical Journal That Anyone Can Understand. Leader in #rarediseases & #knowledgetranslation. #zebrastrong
Rare diseases @Rarediseases3
10 Followers 5 Following
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.)
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.
GeneMAP Research Cent.. @GeneMAPOfficial
2K Followers 79 Following Genetic Medicine of African Populations (GeneMAP) Research Centre. #Genetics #Genomics #Rarediseases #hearingimpairment #SickleCell; #Ethics, #CapacityBuilding
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
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☺️
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…
Dave Tang @davetang31
2K Followers 383 Following Researcher and blogger interested in #bioinformatics #genomics #singlecell #rarediseases #rstats. Created @transcriptomes :wq
Nuno Raimundo @nunoraimundo
2K Followers 632 Following scientist #mitochondria #lysosomes #organelle #crosstalk #metabolism #rarediseases #inbornerrosofmetabolism #Benfica
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
EveHooley @Hooleyeve
601 Followers 162 Following Live life - Love life ❤️ Make Memories #OrganDonation #BloodDonation #CFS #ASD #MuscularDystrophy #Lipodystrophy #RareDiseases #ComplexNeeds #MyGirlsMyWorld
Rare Disease India @raredisease_in
590 Followers 213 Following 70 million Indians suffer from #RareDiseases. #Genomics offers them a new #hope.
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
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
George Goshua, MD MSc @GeorgeGoshuaMD
851 Followers 470 Following Hematologist @Yale | Ed Board @AnnalsofIM |'22 @HarvardChanSPH & @YaleHemOnc | #immunohematology #decisionscience #equity #econ #rarediseases🇬🇪🇨🇦🇺🇸
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
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
Soligenix, Inc. @Soligenix_Inc
906 Followers 308 Following Developing life-saving products and #vaccines for inflammatory #diseases, #rarediseases and #biodefense. $SNGX
RARE_DISEASES @RAREDISEASES4
4 Followers 0 Following RAREST DISEASES IN THE WORLD| WEDO NOT OWN THE CONTENT WE POST
Ertugrul Cagri Bolek,.. @Ertugrul_cagri
955 Followers 1K Following ECB®️|#Calligraphy| #Translational | #Rheumatology & #Immunology| #Vasculitis |#RareDiseases| GR @NIH_NIAMS | #HacettepeUniversity| @EMEUNET WG| #ACRAmbassador
ArcturusRx @ArcturusRx
1K Followers 489 Following We are a global messenger RNA medicines and vaccines company #Arcturus #ArcturusRx #mRNA #Vaccine #Covid19 #Rarediseases $ARCT
Running4Rare @running4rare
657 Followers 351 Following Runners dedicated to raising awareness for #rarediseases while supporting undiagnosed patients. #running4rare
Augusto Zani @augusto_zani
583 Followers 362 Following Surgeon Scientist @sickkids, studying #ExtracellularVesicles to help babies and children win their battles vs. #CDH, #NEC, and other #rarediseases
José Álvarez 🎏 @Gomecello
1K Followers 768 Following Biologist | Environmentalist | Birder | Fighting #RareDiseases such as #Sanfilippo syndrome #Mucopolisacaridosis @StopSanfilippo
Ricardo Mondragon-Gon.. @RicMG90
1K Followers 2K Following 🇲🇽Senior scientist @Sanofi. Mentor at @UNAM Muscular diseases #rarediseases. Opinions are my own
Share4Rare @Share4Rare
2K Followers 997 Following 💻🌍 Collective platform dedicated to promote research in #RareDiseases 🚀 | Tweets en español: @Share4Rare_es | Coordination: @IRSJD_info
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
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
Mary Wang @marywangCM
523 Followers 723 Following Programme Director @rarediseasesint, working on #RareDiseases, global #access; care, diagnosis, medicines. PhD CellBio. My own tweets
Vietnamese Organizati.. @RarediseasesVn
1 Followers 2 Following
Open Health Network @OpenHealthN
2K Followers 2K Following #GenAI & #AI in Healthcare #DigitalTwin #DigitalTwins #NLP #BigData #cardiology #oncology #rarediseases #autism #chronicillness #diabetes & more
RespiFIL 🫁 @RespiFIL
1K Followers 709 Following Filière de santé des maladies respiratoires rares #maladiesrespiratoiresrares #maladiesrares #filieredesante #rarediseases #FSMR *officiel🐦*
Biotherapies_Inst @BiotherapiesIns
826 Followers 512 Following Biotherapies Institute, by AFM-Téléthon (@AFMPresse), to develop treatments against #RareDiseases.#genetherapy #celltherapy https://t.co/6bkTWpst6i
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.
Giovanni Stracquadani.. @DrStracquadanio
763 Followers 690 Following Personal Chair #EngBio @SBSatEd. @EPSRC fellow. Co-director @EdinGenFoundry. Founder of @ZytheraBiotech. Working on #AI & #EngBio for #RareDiseases.
RespiRare @RespiRare_FR
433 Followers 285 Following Centre de référence des maladies respiratoires rares #maladiesrespiratoiresrares #rarediseases #CRMR *Compte officiel*
Safiye @_safiyegnc
338 Followers 224 Following Human-Geneticist 🧬 PhD’ing @UCTHealthSci. #NextGenerationSequencing #RareDiseases Seeking #mutations causing colorectal cancer in #SouthAfrican populations.
RARE’ingToGo 🧡�.. @Dphillips2112
1K Followers 1K Following #Guardians #Browns #CRPS Complex Regional Pain Syndrome #PMBCL Primary Mediastinal B Cell Lymphoma #BreastCancer #RareDiseases #SafeSupply #HarmReduction
Sean Ekins @collabchem
3K Followers 2K Following #PhD, #DSc, CEO @Collabpharma, #WinningGrants #RareDiseases #BattenDisease #ML #AI #DualUse https://t.co/iWTou5LwJE… #Jazz #UnknownKillerRobots #DrugDiscovery
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.
Einés Monteagudo @Einesmv
1K Followers 992 Following Neuropediatra en formación. Investigadora en enfermedades raras 📍 @idis_research #PediatricNeurology #RareDiseases
D'Genes Asoc. de ER @dgenesmurcia
4K Followers 3K Following D'GENES Asociación de #EnfermedadesRaras #EERR #rarediseases #asociacion
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
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
Sam Falsetti @DrFalsetti
2K Followers 2K Following Drug development/ commercialization. Focused on #rarediseases, especially diagnosis/ access to care. Husband/ Father/ Pug owner/ PhD.
Yue Lab at Newcastle @TheYueLab
1K Followers 691 Following Prof Structural Biology @nubiosciences, @UniofNewcastle; formerly at @cmdoxford; all things metabolic enzymes, complexes, #rarediseases. Views my own.
Paula P.Torre @paulaptorre
715 Followers 937 Following Do not practice until you can do it well, practice until you can not do it wrong. #brainlover #MDS #MDSgenetics 🧬🧬#rarediseases . Hospital Ramón y Cajal .
Francesca Ceradini @franceradini
808 Followers 903 Following Molecular Biologist Science Writer #scicomm #Rarediseases #AdvancedTherapies #patients. Scientific Director @TerapieAvanzate @OssMalattieRare Views are my own
DE CARLI Paola @paodecarli
1K Followers 1K Following Directrice Scientifique @Vaincrelamuco #research #cysticfibrosis #rarediseases #patients #accestotreatments #nofakenews #innovation 🇮🇹🇫🇷🇪🇺
Lena Group Respirator.. @Lena_Group4Resp
803 Followers 2K Following 🫁 Welcome to the account of #Respiratory Projects & Events of Lena Group. We support research & education in #RespiratoryDiseases #Bronchiectasis #RareDiseases
Vanessa Lemarié @VanessaLemarie
588 Followers 882 Following #digitalhealth #rarediseases #telemedicine #AI #lifesciences #intrapreneurship #SHEHealth // works @adahealth // DUS/BER
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
Observatório de Doen.. @rederaras
265 Followers 609 Following Observatory of Rare Diseases | University of Brasília #rarediseases #doençasraras #enfermedadesraras #divulgaçãocientífica
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
916 Followers 2K Following Work for a medical research charity. Interested in #rarediseases, #outreach, #genomics, #patientengagement, #openscience
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
Corey Carmichael @CarmichaelCorey
291 Followers 238 Following Account Director @SmithSolve working in healthcare with #rarediseases and #biopharma. Business casual on here - anything that passes the several rounds of edits
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
Andy Hong @AndyHongMD
371 Followers 390 Following #physician #Pediatrics for kids with cancer with a research focus on #cancerresearch #ChildhoodCancer #kidneycancer #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]
Kim @colormystripes
1K Followers 2K Following Mrs | Retired Certified Interior Design + Social Media Manager | Manny 🐩 | #EDS #CRPS #Fibromyalgia #MCS etc #comorbidities #rarediseases | 👩🏻🦰✝️🦓🔥♿️😷
Maureen "virus makes .. @HoatlinLab
764 Followers 1K Following Trained in virology, made vaccines, obsessed with errors of replication & DNA repair, consultant #rarediseases, #datascience, #openscience Tweets mine.
Eva Bermejo-Sánchez,.. @EvaBS14
1K Followers 1K Following Investigación sobre #EnfermedadesRaras & #DefectosCongénitos, sus causas y prevención / Research on #RareDiseases & #BirthDefects, their causes & prevention
Rachel @RachelGwynn
693 Followers 2K Following Speech & Language Therapist. Londoner. Reluctant runner. Interested in #Epilepsy, #Autism, #ABI, #RareDiseases. Lover of: people, kindness, travel, creativity.
Sagar Vaidya @DrSagarVaidya
185 Followers 152 Following Physician-scientist developing new therapies for #RareDiseases. #GeneTherapy. Tweets are my own. Every child deserves a chance.
mirumpharma raredisea.. @Mariasssdd127
0 Followers 5 Following
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
751 Followers 2K Following Assoc Prof Pediatrics @ukclj & @ULMF_pr | NMEC Member | ex Scholar @Stanford | Emerg Leader @worldheartfed | Advisor @fhpatienteurope | #FH #NBS #rarediseases
Dr Aurora Pujol @PujolLab
787 Followers 2K Following Genomic Medicine to decipher Brain Metabolic Disorders, from diagnosis to therapies #RareDiseases @CIBERER @IDIBELL @Icreacommunity. One Planet. Views my own.
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
371 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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