RE(ACT) Community @react_community
#RAREvolution #REACTCongress. This channel is no longer fed. This channel is no longer fed. Follow us on https://t.co/mi6vAAQBDb react-congress.org Worldwide Joined March 2011-
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We decided to leave X because of misinformation and toxic discourse on the platform. You can find us at #bluesky. This channel is no longer fed. bsky.app/profile/rarevo…
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RE(ACT) Community retweeted
Amazing commitment of @Telethonitalia in keeping therapies accessible, proposing a not-for-profit model. Thank you @StefanoBenvenu6 for bringing perspective #REACTCongress @react_community @irdirc
RE(ACT) Community retweeted
Moreover... #Today at the #REACTCongress & @irdirc #conference 👉@marywangCM, @rarediseasesint 👉@StefanoBenvenu6, @Telethonitalia and many others, stay tuned 📻❗️ @BLACKSWANFound @react_community #RAREvolution #RareDisease #malattierare #UDNI
Moreover... #Today at the #REACTCongress & @irdirc #conference 👉@marywangCM, @rarediseasesint 👉@StefanoBenvenu6, @Telethonitalia and many others, stay tuned 📻❗️ @BLACKSWANFound @react_community #RAREvolution #RareDisease #malattierare #UDNI
Terrific presentations in #diagnostics, #gene, #celltherapy, and new technologies, but how to bring treatments to #raredisease patients? The #REACTCongress 2023 will explore it with the Last session of the #REACTCongress 2023, “Systems thinking towards #access.” #RAREvolution
Great wrap-up by the fantastic speakers at the #REACTCongress under the direction of our 2 terrific session chairs @oligogirl and Jacqui Beckmann
Thank YOU 🙏🏻 for your presence and inspiring talk! The ultimate goal of the #REACTCongress is to gather #RAREvolutionary researchers to start new collaborations!🤘🏻
Thank YOU 🙏🏻 for your presence and inspiring talk! The ultimate goal of the #REACTCongress is to gather #RAREvolutionary researchers to start new collaborations!🤘🏻
A powerful and touching story from Julia Vitarello about her journey to find a cure for her daughter Mila, at the #REACTCongress #irdirc #ejprd #blackswanfoundation #RAREvolution
It's time for Carl Morris from @Solid_Bio on #AAV-mediated #genetherapy in #Duchenne Muscular Dystrophy #DMD #REACTCongress #irdirc #ejprd #blackswanfoundation #RAREvolution
Day 3 and time for the session on #Gene and #Cell #therapy, and we start with the outstanding presentation of Guillaume Canaud #REACTCongress #irdirc #ejprd #blackswanfoundation #RAREvolution
RE(ACT) Community retweeted
#REACTCongress and @irdirc #conference 2⃣0⃣2⃣3⃣ ❗️ it was a pleasure to meet Olivier (@OlivierMenzel) Chairman & Founder of the @BLACKSWANFound @react_community #RAREvolution #RareDisease #malattierare @istsupsan #UNIAMO #EURORDIS
RE(ACT) Community retweeted
#Ready to start another #amazing #day of the #REACTCongress and @irdirc #conference 2⃣0⃣2⃣3⃣ ❗️ Today "#Clinical #Research" and "#Gene and #Cell #Therapy" @BLACKSWANFound @react_community #RAREvolution #malattierare @istsupsan #UNIAMO #EURORDIS
Great inspirational talk from @timbuckinx on #wearable and #AI helping #raredisease patients #REACTCongress #irdirc #ejprd #blackswanfoundation #RAREvolution
When friendship can help people living with a #RareDisease, thumbs up 👍🏻 for Paulien Klap. #REACTCongress #irdirc #ejprd #blackswanfoundation #RAREvolution #DMD
RE(ACT) Community retweeted
Fantastic talk by Tim Buckinx (Epihunter) at the @irdirc Conference today. Sony's PS6 and next-gen wearables will have EEG sensors to grant emotion data. Great for real-world data for absent seizures @react_community #rwd #RareDisease
Ready for day 2 ?!?#REACTCongress #irdirc #ejprd #blackswanfoundation #RAREvolution #RareDisease #research
RE(ACT) Community retweeted
Day 1/4 of the RE(ACT) Congress & IRDiRC Conference: ✅ Meet Dr. Olivier Menzel (@OlivierMenzel) Chairman & Founder of the Blackswan Foundation on the first day of the event!
It's time for the opening ceremony at the #REACTCongress with Ruxandra Draghia-Akli, the Queen 👑 and co-founder of @irdirc #irdirc #ejprd #blackswanfoundation #RAREvolution
RE(ACT) Community retweeted
@react_community conference has started. If you are attending: I’m handing out chocolate and origami cranes as long as the supply lasts. Klaus is not for sale.
This is a start for the #REACTCongress 2023 in collaboration with @irdirc and @EJPRareDiseases @BLACKSWANFound #irdirc #ejprd #blackswanfoundation #RAREvolution
EURORDIS-Rare Disease... @eurordis
32K Followers 1K 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 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.
Rare Disease Day @rarediseaseday
42K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
ERDERA @ERDERA_org
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National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following making #rarediseases an everyday conversation https://t.co/kZWskP9Ojj
@ERN_RND 🧠 @ERN_RND
3K Followers 716 Following European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: https://t.co/nowjhyNigm
JWMDRC @jwmdrc
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VASCERN @vascern
2K Followers 613 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
Stephanie Fischer @RarePOV
7K Followers 5K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
AnnemiekeAartsma-Rus @oligogirl
3K Followers 456 Following Translating science from bench to bedside and from jargon to lay language
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.
ERN EuroBloodNet @ERNEuroBloodNet
2K Followers 405 Following ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases. Funded by the European Union.
ern euro_nmd @euro_nmd
2K Followers 686 Following Building bridges and breaking barriers in rare neuromuscular diseases.
Solve-RD @Solve_RD
2K Followers 368 Following Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.
MedicsforRareDisease @MedicsForRare
5K Followers 2K Following This account is no longer active, please continue to follow our work on Instagram and Bluesky! @medicsforrare
FamilieSCN2A @FamilieSCN2A
2K Followers 1K Following Our vision is to find effective treatments and a cure for SCN2A disorders.
TREAT-NMD® @TREAT_NMD
4K Followers 542 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world.
Muhammad Bilal @bilalkhan16496
0 Followers 9 Following Software Engineer | MERN Stack Developer | JavaScript | Building full-stack web apps | Open to opportunities
amine mansouri @m9_amine
118 Followers 373 Following
Ahmed Farahat @Ahmedd_farhat
444 Followers 720 Following Manchester United. #Mufc https://t.co/OHiWux9BN1
Phani Kumar Manchala @pkmanchala
51 Followers 920 Following admires @seethakkaMLA | @PawanKalyan | @KCRBRSPresident | Centered Left
Sajak Shrestha @SajakShres94113
0 Followers 4 Following
Merdekiyos Estifanos @merdekiyos1995
0 Followers 7 Following
Abu 'Umar ♤ @hismaheal009
201 Followers 1K Following An Entrepreneur | Shoemaker | Programmer ▶️Click the link below to view our👇👇 products https://t.co/FOGPjukmh8
Bilal Fareed @BilalFareed54
1 Followers 40 Following
Sahos Mia @sahosmia
374 Followers 646 Following React | NextJs | Laravel | Web Designer and Developer | Front-end-developer
Sam santhosh @Samsant50449629
1 Followers 16 Following
Prerna khanna @prernakhannna
22 Followers 369 Following
Canadian Rare Disease... @CanadianRDN
358 Followers 819 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Kunal Sharma @Kunalx_07
4 Followers 62 Following
Tejas Shinde @Tejassgshinde
0 Followers 44 Following
Anastasia @mucanastasia
1 Followers 61 Following
Anurag Singh @anuragsingh2751
355 Followers 387 Following Software Engineer || Competitive programmer
Amey Zulkanthiwar @APZulkanthiwar
0 Followers 6 Following
ram.rk @ram_rk1405
3 Followers 12 Following Currently in my training arc with the MERN stack and Spring Boot, aspiring to become a full stack developer.
Maria J Barrero @Maria_J_Barrero
29 Followers 65 Following #RareDiseases researcher-IIER @saludISCIII Investigación en #EnfermedadesRaras
waleed shaker @Wa16638Shaker
80 Followers 1K Following
SHUBHAM SHARMA @Shubham9128442
2 Followers 138 Following
md arifmanihar @MdArif811
0 Followers 4 Following
Dheeraj Yadav @Dheeraj160798
2 Followers 47 Following
Asifkaif @asifkaif21
7 Followers 51 Following
Dushyant Lilhare @Dushyant_0097
0 Followers 21 Following
Deni truth @TruthDeni
281 Followers 1K Following Safety Officer/Forklift Operator. Sharing my opinion. I as a Safety officer has helped over 18000 workers to work safely. ISPON Certified.
The Med13L Foundation @Med13L_Fdn
97 Followers 615 Following Supporting MED13L families through awareness, research, and community. Connecting hearts and minds to overcome challenges. #NDD #Epilepsy #Autism #ID 🧬💙🧠
Think_tank_lass @think_lass
0 Followers 68 Following Love only for Allah💖✨ Selflove is peace🌸💕 Just chill and vibe alone🥂 My dear, STUDY to buy your self the life you deserve🖤📖
Vishal Singh @VishalS05658266
112 Followers 271 Following "Java & Spring Boot dev 🚀 | Learning Frontend with HTML/CSS, ReactJS, React Native 💻 |web3|Learning devops
Praveen Mishra @parshuu007
33 Followers 137 Following Love Programming, Traveling, Tech geek, Crypto investor...🤗
WISDOM WOKE @WISDOMWOKE1
93 Followers 539 Following fullstack javascript Developer #javaScript #Vue #express #ai #React #nodejs #aws and a technician writer
Taniya malviya @coder_tani
49 Followers 246 Following korean lover | fullstack developer | angular js | react js | react native | nodejs | nextjs | nestjs | AWS S3 | AWS EC2
International Hunting... @ihahuntington
40 Followers 175 Following A non-profit umbrella organization established in 1974 by Marjorie Guthrie. It now represents more than 250 000 individuals and member associations
Lena Group Respirator... @Lena_Group4Resp
1K Followers 3K Following 🫁 Welcome to the account of #Respiratory Projects & Events of Lena Group. We support research & education in #RespiratoryDiseases #Bronchiectasis #RareDiseases
Rare-X @RareX_2024
109 Followers 331 Following Rare-X 2024, Africa's leading conference on rare disease treatment and access, will be taking place at Indaba Hotel, Johannesburg from 14-17 February 2024
Mohammad Sohail @sohail9744
1 Followers 20 Following Full Stack Engineer | Open Source | NPM packages | SAUI5 | JS | let's contribute with us!
Sharad Mathukiya @Sharad042
36 Followers 354 Following Engineer. Builder. Obsessed with creating the next big thing.
EURORDIS-Rare Disease... @eurordis
32K Followers 1K 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 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.
Rare Disease Day @rarediseaseday
42K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
ERDERA @ERDERA_org
4K Followers 2K Following The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Cambridge Rare Diseas... @camraredisease
8K Followers 6K Following making #rarediseases an everyday conversation https://t.co/kZWskP9Ojj
@ERN_RND 🧠 @ERN_RND
3K Followers 716 Following European Reference Network for Rare Neurological Diseases (ERN-RND) to improve diagnosis, care & treatment of RND patients. Free webinars: https://t.co/nowjhyNigm
EpiCARE @EpiCARE_ERN
3K Followers 456 Following European Reference Network for Rare and Complex Epilepsies. We are 50 specialist hospitals in 24 European countries with expertise in epilepsy & research.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
VASCERN @vascern
2K Followers 613 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
Stephanie Fischer @RarePOV
7K Followers 5K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
AnnemiekeAartsma-Rus @oligogirl
3K Followers 456 Following Translating science from bench to bedside and from jargon to lay language
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.
Ethan Perlstein bio/a... @eperlste
19K Followers 2K Following ceo @PerlaraPBC (@ycombinator W16), ceo @epalrestat, ceo @endrarediseases $CURES, evo pharmacologist, mTOR worshipper $RAPTOR, cofounder of K&L
ERN EuroBloodNet @ERNEuroBloodNet
2K Followers 405 Following ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases. Funded by the European Union.
ern euro_nmd @euro_nmd
2K Followers 686 Following Building bridges and breaking barriers in rare neuromuscular diseases.
Solve-RD @Solve_RD
2K Followers 368 Following Solve-RD is a H2020 funded flagship EU project. We will solve large numbers of rare diseases, for which a molecular cause is not known yet.
TREAT-NMD® @TREAT_NMD
4K Followers 542 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world.
ERN-ITHACA @ERNIthaca
1K Followers 371 Following European Reference Network on congenital malformations and rare intellectual disability (ERN-ITHACA).
Mary Wang @marywangCM
506 Followers 704 Following #RareDiseases, global #access; care, diagnosis, medicines. My own tweets
Mila's Miracle @stopbatten
837 Followers 347 Following Mila fought hard against Batten disease, a rare fatal condition with no cure. Her story is now giving new hope to millions with genetic disease.
Solid Biosciences @Solid_Bio
2K Followers 206 Following Solid’s mandate is to improve the lives of patients living with devastating neuromuscular and cardiac diseases. #TogetherWeAreSolid
Tim Buckinx @timbuckinx
199 Followers 483 Following
INFRAFRONTIER @InfrafrontierEU
878 Followers 464 Following INFRAFRONTIER is the European Research Infrastructure for Modelling Human Diseases
Rare Disorders Zimbab... @ChildYouthCareZ
263 Followers 307 Following Supporting the interests of children living with rare medical diseases.# inherited bleeding disorders #health education # quality care# early diagnosis
Guillaume Canaud (MD,... @CanaudLab
2K Followers 670 Following Translational medicine. Hôpital Necker Enfants Malades/Université Paris Cité.
Christina Waters @RareWaters
95 Followers 161 Following
maurizio molinari @MolinariLab
881 Followers 467 Following Cell biologist, Mechanistic dissection of protein folding, quality control, degradation, UPR, and ER-phagy pathways. Non sono direttore di giornale. My opinions
Irene Norstedt @IreneNorstedt
5K Followers 4K Following Director @EU_Commission 🇪🇺 'People: Health & Society' Directorate, DG Research & Innovation @EUScienceInnov @HorizonEU #EUHealthResearch #UnionOfEquality
ERNICA @ernica_ern
680 Followers 130 Following The European Reference Network for Rare Inherited Congenital Anomalies
ERN-LUNG @ErnLung
1K Followers 2K Following
ERN CRANIO @cranio_ern
524 Followers 142 Following The European Reference Network for rare and/or complex craniofacial anomalies and ENT disorders
ERN TransplantChild @TransplantChild
743 Followers 418 Following European Reference Network on transplantation in children
_ERNRITA @_ERNRITA
1K Followers 845 Following ERN for Rare Immunodeficiency, autoinflammatory, autoimmune and paediatric rheumatology Diseases - For all patients with rare immune disorders in Europe
ERN eUROGEN @ERN_eUROGEN
1K Followers 536 Following Improving diagnosis, treatment & care for rare uro-recto-genital diseases & complex conditions needing highly specialised surgery. Funded by the EU.
David Pearce @DrDavidPearce
720 Followers 132 Following President of Innovation & Research for Sanford Health. Chair, International Rare Disease Research Consortium (IRDiRC) Opinions tweeted are my own.
Lombard Odier @lombardodier
63K Followers 148 Following Rethinking everything since 1796. Shaping global wealth whilst guiding our clients towards a sustainable economy.
RESTORE @RESTOREhorizon
392 Followers 339 Following RESTORE is an initiative that aims to accelerate the availability of Advanced Therapies to patients and make Europe the spearhead of #advancedtherapies R&D.
Horizon Europe 🇪�... @HorizonEU
179K Followers 2K Following Funding opportunities, projects & events from the EU's Research & Innovation Programme. Follow also @EUScienceInnov, @EZaharievaEU & @lemaitre_eu
Cure Rare Disease @CureRareDisease
4K Followers 243 Following 501(c)(3) nonprofit leading a nationwide collaboration of researchers and clinicians in order to develop life-saving therapeutics for rare diseases.
C Rockman-Greenberg @drcgreenberg
358 Followers 376 Following Academic clinician, University of Manitoba and WRHA and Research Scientist, Children's Hospital Research Institute of Manitoba
The Genesis Foundatio... @TheGenFound
738 Followers 2K Following The Genesis Foundation for Children funds clinical care and therapy for children born with complex genetic disorders and rare diseases.
Anne Carpenter, PhD @DrAnneCarpenter
22K Followers 2K Following Discovery in images. Enthralled by science. 5 kids. She. SAB Recursion, Quiver. Founder SyzOnc. opinions my own. https://t.co/CQCHnSAc9M
Cydan @Cydanco
429 Followers 578 Following Cydan, an orphan drug accelerator dedicated to creating therapies that improve the lives of patients living with rare genetic diseases.
GA4GH @GA4GH
10K Followers 1K Following Global Alliance for Genomics & Health. Working together for responsible, voluntary & secure sharing of genomic & clinical data for human health.
Children's Healthcare... @ChildHealthCan
7K Followers 1K Following Through purposeful partnerships, we accelerate excellence and innovation in health systems caring for children and youth.
MICYRN @micyrn
3K Followers 1K Following Maternal Infant Child & Youth Research Network: Catalyzing research in maternal/child health, clinical trials, ethics, rare diseases & data standards
Genome Canada @GenomeCanada
11K Followers 2K Following Transforming genomics research into solutions for Canada | Transformer la recherche en génomique en solutions pour le Canada
CHEO Ottawa @CHEO
39K Followers 429 Following Official account for CHEO, CHEO Research Institute & CHEO Foundation. Compte officiel du CHEO, Institut de recherche et Fondation
Lochmüller Lab @LochmullerLab
790 Followers 325 Following Hanns Lochmüller's research lab in Ottawa, Canada. Clinical and basic research in neuromuscular and rare disease. Tweets by Hanns and team.
Dwi U. Kemaladewi @DKemaladewi
1K Followers 2K Following 👩🏻🔬Principal Investigator @US_FDA | Therapeutics Genetics in Rare Diseases 💪🧠🧬🐀💉 | 🔋 by ☕ & 😍 | HopOnHopOff 🇮🇩🇳🇱🇨🇦🇺🇸➡️🚀🌜
Rare Diseases Malta @RareDiseasesMT
227 Followers 101 Following The National Alliance for Rare Diseases Support – Malta
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.
EURACAN @ERN_EURACAN
918 Followers 348 Following #EURACAN is the #ERN for #rare adult solid #cancers: 1 of the 24 #EuropeanReferenceNetworks working on a range of thematic issues. 🔗 https://t.co/nYHhrtwCqg
MetabERN @Metab_ERN
2K Followers 377 Following The European Reference Network for Hereditary Metabolic Diseases. A better future for Rare Inherited Metabolic Disease patients. RT ≠ Endorsement. #Together
ERN ReCONNET 🇪🇺 @ern_reconnet
3K Followers 883 Following 🔬🩺 European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases #ERNReCONNET
ERN-EYE @ErnEyeEU
1K Followers 210 Following https://t.co/hGZjQCukos - ERN-EYE is a European Reference Network dedicated to Rare Eye Diseases.Trends for United States
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