#rarediseases โ Public Fediverse posts
Live and recent posts from across the Fediverse tagged #rarediseases, aggregated by home.social.
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Dangerous tick-borne virus spreading to more Americans, experts warn
NEWYou can now listen to Fox News articles! A rare and potentially fatal tick-borne illness currently spreading acrossโฆ
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Health #infectiousdisease #Insects #Lifestyle #outbreaks #outdoorlivingrealestatelifestyle #rarediseases #Viruses
https://www.newsbeep.com/us/733680/ -
Dangerous tick-borne virus spreading to more Americans, experts warn
NEWYou can now listen to Fox News articles! A rare and potentially fatal tick-borne illness currently spreading acrossโฆ
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Health #infectiousdisease #Insects #Lifestyle #outbreaks #outdoorlivingrealestatelifestyle #rarediseases #Viruses
https://www.newsbeep.com/us/733680/ -
Incyte (INCY) Wins EU Backing For Opzelura As Pipeline Data Builds Across Four Drugs
Get insights on thousands of stocks from the global community of over 7 million individual investors at Simplyโฆ
#Europe #EU #atopicdermatitis #EuropeanCommission #EuropeanUnion #globalcommunity #Incyte #individualinvestors #myeloproliferativeneoplasms #Opzelura #rareconditions #rarediseases #regulatoryupdates #treatmentguidelines
https://www.europesays.com/europe/80625/ -
https://www.europesays.com/ch/82235/ Novartis dystrophy data tee up regulatory talks on Avidity drug #biotech #ClinicalData #FierceBiotechHomepage #MuscularDystrophy #Novartis #RareDiseases #siRNA
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#VeteransAdministration #RareDiseases #Military
From Stars and Stripes: Veteran with rare muscle-wasting disease seeks VA recognition
https://www.stripes.com/veterans/2026-05-29/veteran-rare-disease-va-recognition-21816111.html
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#VeteransAdministration #RareDiseases #Military
From Stars and Stripes: Veteran with rare muscle-wasting disease seeks VA recognition
https://www.stripes.com/veterans/2026-05-29/veteran-rare-disease-va-recognition-21816111.html
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#VeteransAdministration #RareDiseases #Military
From Stars and Stripes: Veteran with rare muscle-wasting disease seeks VA recognition
https://www.stripes.com/veterans/2026-05-29/veteran-rare-disease-va-recognition-21816111.html
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๐ฅ๐ฎ๐ฟ๐ฒ ๐ฑ๐ถ๐๐ฒ๐ฎ๐๐ฒ ๐๐ฟ๐ฒ๐ฎ๐๐บ๐ฒ๐ป๐ ๐ฑ๐ฒ๐บ๐ฎ๐ป๐ฑ ๐ฎ๐ฐ๐ฟ๐ผ๐๐ ๐๐ต๐ฒ ๐ ๐ถ๐ฑ๐ฑ๐น๐ฒ ๐๐ฎ๐๐ ๐ถ๐ ๐ฒ๐ป๐๐ฒ๐ฟ๐ถ๐ป๐ด ๐ฎ ๐ต๐ถ๐ด๐ต ๐ด๐ฟ๐ผ๐๐๐ต ๐ต๐ฒ๐ฎ๐น๐๐ต๐ฐ๐ฎ๐ฟ๐ฒ ๐ฝ๐ต๐ฎ๐๐ฒ!
The ๐ ๐ถ๐ฑ๐ฑ๐น๐ฒ ๐๐ฎ๐๐ ๐ฅ๐ฎ๐ฟ๐ฒ ๐๐ถ๐๐ฒ๐ฎ๐๐ฒ๐ ๐ง๐ฟ๐ฒ๐ฎ๐๐บ๐ฒ๐ป๐ ๐ ๐ฎ๐ฟ๐ธ๐ฒ๐ is expanding as governments improve healthcare access, diagnostics, and specialty drug availability. Rising awareness and advancements in personalized medicine are reshaping patient care outcomes.
๐ฅ๐ฒ๐ฎ๐ฑ ๐บ๐ผ๐ฟ๐ฒ: https://www.kenresearch.com/middle-east-rare-diseases-treatment-market
#Healthcare #RareDiseases #MiddleEast #PharmaIndustry -
siRNA Duplexes Market in Germany | Report โ IndexBox
#Germany #DE #Europe #EU #Europa #BioinformaticsforsiRNAdesign&off-targetprediction #biopharmamarketreport #Chemicalmodificationchemistries #forecast #Genefunctionstudies #High-throughputgeneticscreening #High-throughputpurification&QC(HPLC #marketanalysis #MS) #rarediseases) #siRNAduplexes #Solid-phaseoligonucleotidesynthesis #Targetidentification/validation #Therapeuticcandidatedevelopment(oncology
https://www.europesays.com/germany/11517/ -
This is the first step to do the amazing at CSL Plasma. Your help is essential to create life-saving medicines for patients in need. Use my link and we both get rewarded.
https://rewards.cslplasma.com/referral/referral-unique-code/eyJkb25vcklEIjoiMDBFQzNTOSIsImNvZGUiOiI5OU1GN0JNS1ZEIiwicmVnaW9uU2hvcnROYW1lIjoidXMifQ#CSL #Donate #DonatePlasma #PlasmaDonation
#PlasmaDonor #SaveLives #BloodPlasma #GivePlasma #BeAHero
#CommunitySupport #MakeADifference #HelpOthers
#PayItForward #PlasmaTherapy
#MedicalResearch
#ChronicIllnessSupport #Healthcare
#RareDiseases #SideHustle #ExtraCash #PaidToSaveLives -
This is the first step to do the amazing at CSL Plasma. Your help is essential to create life-saving medicines for patients in need. Use my link and we both get rewarded.
https://rewards.cslplasma.com/referral/referral-unique-code/eyJkb25vcklEIjoiMDBFQzNTOSIsImNvZGUiOiI5OU1GN0JNS1ZEIiwicmVnaW9uU2hvcnROYW1lIjoidXMifQ#CSL #Donate #DonatePlasma #PlasmaDonation
#PlasmaDonor #SaveLives #BloodPlasma #GivePlasma #BeAHero
#CommunitySupport #MakeADifference #HelpOthers
#PayItForward #PlasmaTherapy
#MedicalResearch
#ChronicIllnessSupport #Healthcare
#RareDiseases #SideHustle #ExtraCash #PaidToSaveLives -
This is the first step to do the amazing at CSL Plasma. Your help is essential to create life-saving medicines for patients in need. Use my link and we both get rewarded.
https://rewards.cslplasma.com/referral/referral-unique-code/eyJkb25vcklEIjoiMDBFQzNTOSIsImNvZGUiOiI5OU1GN0JNS1ZEIiwicmVnaW9uU2hvcnROYW1lIjoidXMifQ#CSL #Donate #DonatePlasma #PlasmaDonation
#PlasmaDonor #SaveLives #BloodPlasma #GivePlasma #BeAHero
#CommunitySupport #MakeADifference #HelpOthers
#PayItForward #PlasmaTherapy
#MedicalResearch
#ChronicIllnessSupport #Healthcare
#RareDiseases #SideHustle #ExtraCash #PaidToSaveLives -
This is the first step to do the amazing at CSL Plasma. Your help is essential to create life-saving medicines for patients in need. Use my link and we both get rewarded.
https://rewards.cslplasma.com/referral/referral-unique-code/eyJkb25vcklEIjoiMDBFQzNTOSIsImNvZGUiOiI5OU1GN0JNS1ZEIiwicmVnaW9uU2hvcnROYW1lIjoidXMifQ#CSL #Donate #DonatePlasma #PlasmaDonation
#PlasmaDonor #SaveLives #BloodPlasma #GivePlasma #BeAHero
#CommunitySupport #MakeADifference #HelpOthers
#PayItForward #PlasmaTherapy
#MedicalResearch
#ChronicIllnessSupport #Healthcare
#RareDiseases #SideHustle #ExtraCash #PaidToSaveLives -
This is the first step to do the amazing at CSL Plasma. Your help is essential to create life-saving medicines for patients in need. Use my link and we both get rewarded.
https://rewards.cslplasma.com/referral/referral-unique-code/eyJkb25vcklEIjoiMDBFQzNTOSIsImNvZGUiOiI5OU1GN0JNS1ZEIiwicmVnaW9uU2hvcnROYW1lIjoidXMifQ#CSL #Donate #DonatePlasma #PlasmaDonation
#PlasmaDonor #SaveLives #BloodPlasma #GivePlasma #BeAHero
#CommunitySupport #MakeADifference #HelpOthers
#PayItForward #PlasmaTherapy
#MedicalResearch
#ChronicIllnessSupport #Healthcare
#RareDiseases #SideHustle #ExtraCash #PaidToSaveLives -
Wir starten in die letzte Inhalationswoche.
Dank den Frรผhlingsferien mรผssen wir wenigstens nicht schon 6 oder 7 Uhr anfangen. Also schaffen wir das doch locker ๐ช๐
#inhalation #antibiotikum #ataxiateleangiectasia #lungenkrankheit #rarediseases -
Wir starten in die letzte Inhalationswoche.
Dank den Frรผhlingsferien mรผssen wir wenigstens nicht schon 6 oder 7 Uhr anfangen. Also schaffen wir das doch locker ๐ช๐
#inhalation #antibiotikum #ataxiateleangiectasia #lungenkrankheit #rarediseases -
Wir starten in die letzte Inhalationswoche.
Dank den Frรผhlingsferien mรผssen wir wenigstens nicht schon 6 oder 7 Uhr anfangen. Also schaffen wir das doch locker ๐ช๐
#inhalation #antibiotikum #ataxiateleangiectasia #lungenkrankheit #rarediseases -
Iโll attend the #EuroNDD Workshop in Warsaw in April. Anyone around the Fediverse going there as well? โ> letโs connect!
Iโm looking forward to present our work at https://www.findme2care.de AND hear about all the other projects.
Also: Iโll be co-hosting an educational session and roundtable discussion titled โBuilding Patient Registries under the GDPR โ The Good, the Bad and the Uglyโ โ> there are a few seats left for conference attendees!
#humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry
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Iโll attend the #EuroNDD Workshop in Warsaw in April. Anyone around the Fediverse going there as well? โ> letโs connect!
Iโm looking forward to present our work at https://www.findme2care.de AND hear about all the other projects.
Also: Iโll be co-hosting an educational session and roundtable discussion titled โBuilding Patient Registries under the GDPR โ The Good, the Bad and the Uglyโ โ> there are a few seats left for conference attendees!
#humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry
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https://www.europesays.com/ch/35861/ Roche stops work on experimental SMA drug #MuscularDystrophy #RareDiseases #Roche #ScholarRock #SMAPatients #SpinalMuscularAtrophy
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๐ก A genuine surprise: The active ingredient in #Viagra, sildenafil, helps treat a rare genetic disorder! This unexpected finding has now been uncovered by researchers at #CharitรฉBerlin. The drug showed positive effects on the course of the disease in six patients with #Leigh syndrome. More on the promising results:
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๐ก A genuine surprise: The active ingredient in #Viagra, sildenafil, helps treat a rare genetic disorder! This unexpected finding has now been uncovered by researchers at #CharitรฉBerlin. The drug showed positive effects on the course of the disease in six patients with #Leigh syndrome. More on the promising results:
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Gene therapy revolutionizes medicine by correcting defective genes and treating inherited diseases, cancers, and rare disorders with advanced biotechnology innovations.
#GeneTherapy #Biotechnology #GeneticEngineering #MedicalInnovation #PrecisionMedicine #CancerResearch #RareDiseases #BiotechStudents #LifeSciences #BioResire -
Gene therapy revolutionizes medicine by correcting defective genes and treating inherited diseases, cancers, and rare disorders with advanced biotechnology innovations.
#GeneTherapy #Biotechnology #GeneticEngineering #MedicalInnovation #PrecisionMedicine #CancerResearch #RareDiseases #BiotechStudents #LifeSciences #BioResire -
๐ช Could one molecular โtypoโ break the balance between strength and flexibility in our muscles?
๐ Dynamical features of smooth muscle actin pathological mutants: The arginine-257(258)-Cysteine cases. Computational and Structural Biotechnology Journal, DOI: https://doi.org/10.1016/j.csbj.2025.02.010
๐ CSBJ: https://www.csbj.org/
#ComputationalBiology #MolecularDynamics #ProteinScience #Actin #RareDiseases #PrecisionMedicine #Biophysics #CryoEM #Bioinformatics #DrugDiscovery #VisceralMyopathy #AorticAneurysm
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๐ช Could one molecular โtypoโ break the balance between strength and flexibility in our muscles?
๐ Dynamical features of smooth muscle actin pathological mutants: The arginine-257(258)-Cysteine cases. Computational and Structural Biotechnology Journal, DOI: https://doi.org/10.1016/j.csbj.2025.02.010
๐ CSBJ: https://www.csbj.org/
#ComputationalBiology #MolecularDynamics #ProteinScience #Actin #RareDiseases #PrecisionMedicine #Biophysics #CryoEM #Bioinformatics #DrugDiscovery #VisceralMyopathy #AorticAneurysm
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๐ช Could one molecular โtypoโ break the balance between strength and flexibility in our muscles?
๐ Dynamical features of smooth muscle actin pathological mutants: The arginine-257(258)-Cysteine cases. Computational and Structural Biotechnology Journal, DOI: https://doi.org/10.1016/j.csbj.2025.02.010
๐ CSBJ: https://www.csbj.org/
#ComputationalBiology #MolecularDynamics #ProteinScience #Actin #RareDiseases #PrecisionMedicine #Biophysics #CryoEM #Bioinformatics #DrugDiscovery #VisceralMyopathy #AorticAneurysm
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๐ช Could one molecular โtypoโ break the balance between strength and flexibility in our muscles?
๐ Dynamical features of smooth muscle actin pathological mutants: The arginine-257(258)-Cysteine cases. Computational and Structural Biotechnology Journal, DOI: https://doi.org/10.1016/j.csbj.2025.02.010
๐ CSBJ: https://www.csbj.org/
#ComputationalBiology #MolecularDynamics #ProteinScience #Actin #RareDiseases #PrecisionMedicine #Biophysics #CryoEM #Bioinformatics #DrugDiscovery #VisceralMyopathy #AorticAneurysm
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๐ช Could one molecular โtypoโ break the balance between strength and flexibility in our muscles?
๐ Dynamical features of smooth muscle actin pathological mutants: The arginine-257(258)-Cysteine cases. Computational and Structural Biotechnology Journal, DOI: https://doi.org/10.1016/j.csbj.2025.02.010
๐ CSBJ: https://www.csbj.org/
#ComputationalBiology #MolecularDynamics #ProteinScience #Actin #RareDiseases #PrecisionMedicine #Biophysics #CryoEM #Bioinformatics #DrugDiscovery #VisceralMyopathy #AorticAneurysm
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Finally, this work would not have been possible without the input and work from all my co-authors from UK, France, Italy and USA. I am grateful that I could be part of this journee and want to thank also the #FoundationForPraderWilliResearch (#FPWR) for their generous funding! I hope that this research may at some day contribute to improve the life of patients with #PraderWilliSyndrome (#PWS) or other #RareDiseases.
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Finally, this work would not have been possible without the input and work from all my co-authors from UK, France, Italy and USA. I am grateful that I could be part of this journee and want to thank also the #FoundationForPraderWilliResearch (#FPWR) for their generous funding! I hope that this research may at some day contribute to improve the life of patients with #PraderWilliSyndrome (#PWS) or other #RareDiseases.
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Only four people in Australia have been diagnosed with rare genetic disease CHOPS
Isla Stโฆ
#NewsBeep #News #Genetics #AFF4 #AU #Australia #CHOPS #CHOPSaustralia #CHOPSsyndrome #chopssyndromeglobal #Cognitiveimpairmentandcoarsefacialfeatures #CorneliadeLange #CorneliaDeLangeSyndrome #extremelyrarediseases #extremelyraregeneticdisorders #FondazioneCHOPS #geneticdiseases #Health #IanKrantz #KosukeIzumi #RareDiseases #Science #shortstatureandskeletalabnormalities
https://www.newsbeep.com/au/204356/ -
Only four people in Australia have been diagnosed with rare genetic disease CHOPS https://www.byteseu.com/1439518/ #AFF4 #Australia #CHOPS #CHOPSAustralia #CHOPSSyndrome #ChopsSyndromeGlobal #CognitiveImpairmentAndCoarseFacialFeatures #CorneliaDeLange #CorneliaDeLangeSyndrome #ExtremelyRareDiseases #ExtremelyRareGeneticDisorders #FondazioneCHOPS #GeneticDiseases #Health #IanKrantz #KosukeIzumi #RareDiseases #ShortStatureAndSkeletalAbnormalities
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Developments in diagnostic and surgical techniques in children with sagittal suture craniosynostosis: a systematic review spanning the last 30 years | Orphanet Journal of Rare Diseases
Literature search and stuโฆ
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Genetics #Developmentofsurgicalinterventions #general #HumanGenetics #Literaturereview #Medicine/PublicHealth #Pharmacology/Toxicology #rarediseases #Sagittalsuturecraniosynostosis #Science
https://www.newsbeep.com/us/89436/ -
Developments in diagnostic and surgical techniques in children with sagittal suture craniosynostosis: a systematic review spanning the last 30 years | Orphanet Journal of Rare Diseases
Literature search and stuโฆ
#NewsBeep #News #US #USA #UnitedStates #UnitedStatesOfAmerica #Genetics #Developmentofsurgicalinterventions #general #HumanGenetics #Literaturereview #Medicine/PublicHealth #Pharmacology/Toxicology #rarediseases #Sagittalsuturecraniosynostosis #Science
https://www.newsbeep.com/us/89436/ -
๐งฌ Happening today! Join us for a GHGA lecture by Prof. Rami Abou Jamra (University of Leipzig):
"Genome sequencing for rare disease diagnostics: uncovering hidden causal variants"
Learn how genome sequencing is advancing the diagnosis of rare diseases beyond exome analysis.๐ May 21, 2025 | ๐ 4PM
๐ Register here: https://dkfz-de.zoom.us/meeting/register/eE1w4zLpTFO4z2jcuUxbDg#/registrationPart of the Advances in Data-Driven Biomedicine series.
#Genomics #RareDiseases #GHGA #BiomedicalResearch #GenomeSequencing -
๐ฏ Just published! The February IHI newsletter at https://europa.eu/!cNp8tC
โ How our projects are helping to make the #EHDS a reality
โ Our MACUSTAR project on eye disease received a letter of support from the EMA
โ AMR project COMBINE trained an #AI model to improve the selection of compounds that can fight multi-drug resistant bacteria
โ We meet new IHI projects on #RareDiseases, greener drug manufacture & more patient friendly #BloodTests
#RareDiseaseDay #IHITransformingHealth #HorizonEU -
๐ฏ Just published! The February IHI newsletter at https://europa.eu/!cNp8tC
โ How our projects are helping to make the #EHDS a reality
โ Our MACUSTAR project on eye disease received a letter of support from the EMA
โ AMR project COMBINE trained an #AI model to improve the selection of compounds that can fight multi-drug resistant bacteria
โ We meet new IHI projects on #RareDiseases, greener drug manufacture & more patient friendly #BloodTests
#RareDiseaseDay #IHITransformingHealth #HorizonEU -
Binance Labs ventures into DeSci with BIO Protocol investment - The decentralized science DAO supports healthcare efforts that might oth... - https://cointelegraph.com/news/binance-labs-invests-in-bio-protocol #decentralizedscience #healthsciencefunding #quantumbiology #rarediseases #binancelabs #bioprotocol #longevity #biotech #ip-nfts #biodao #desci
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Binance Labs ventures into DeSci with BIO Protocol investment - The decentralized science DAO supports healthcare efforts that might oth... - https://cointelegraph.com/news/binance-labs-invests-in-bio-protocol #decentralizedscience #healthsciencefunding #quantumbiology #rarediseases #binancelabs #bioprotocol #longevity #biotech #ip-nfts #biodao #desci
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Binance Labs ventures into DeSci with BIO Protocol investment - The decentralized science DAO supports healthcare efforts that might oth... - https://cointelegraph.com/news/binance-labs-invests-in-bio-protocol #decentralizedscience #healthsciencefunding #quantumbiology #rarediseases #binancelabs #bioprotocol #longevity #biotech #ip-nfts #biodao #desci
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Binance Labs ventures into DeSci with BIO Protocol investment - The decentralized science DAO supports healthcare efforts that might oth... - https://cointelegraph.com/news/binance-labs-invests-in-bio-protocol #decentralizedscience #healthsciencefunding #quantumbiology #rarediseases #binancelabs #bioprotocol #longevity #biotech #ip-nfts #biodao #desci
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Arrived!
#Cilia2024 about to start๐๐
@cilia @cellbio #cilia #rarediseases #ciliopathies #centrosome
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๐ Say hello to our new IHI project, PaLaDIn! Their goal is to develop a platform that collects innovative, real-world data #RWD from people with #RareDiseases. ๐ More: https://www.ihi.europa.eu/news-events/newsroom/paladin-project-puts-rare-disease-patients-centre-data-collection-platform #IHITransformingHealth #EUResearch #HealthResearch #Health #Research #EU #Data
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Hola Titรกnicos, el mes de Febrero, es el mes de las Enfermedades Raras, y este aรฑo se celebra bajo el lema : "Comparte tus colores"
https://somosdisca.es/mes-de-las-enfermedades-raras-2024/
#febrero #mesdelasnefermedadesraras
#febreroraro #enfermedadrara #enfermedadesraras #Disability #disabilities #RareDiseases discapacidad #rare_diseases #RareDiseasesday #salud #enfermedad #visibilidad #cuidados #investigacion #diferente #cebra #titanicos #titan #gentetitanica #somosdisca -
Hola Titรกnicos, el mes de Febrero, es el mes de las Enfermedades Raras, y este aรฑo se celebra bajo el lema : "Comparte tus colores"
https://somosdisca.es/mes-de-las-enfermedades-raras-2024/
#febrero #mesdelasnefermedadesraras
#febreroraro #enfermedadrara #enfermedadesraras #Disability #disabilities #RareDiseases discapacidad #rare_diseases #RareDiseasesday #salud #enfermedad #visibilidad #cuidados #investigacion #diferente #cebra #titanicos #titan #gentetitanica #somosdisca -
๐ฃ ๐ฃ ๐ฃ There are less than nine months remaining until Cilia2024, happening from September 10th to 13th in Dublin! ๐ฎ๐ช :happy:
Remember to mark your calendars! What an amazing lineup of programs and speakers!
For more information, visit http://cilia2024.ie/
Registration opens in February.
@cilia @cellbiology @cellbio
#CellBiology #DevelopmentalBiology #DevBio #Nephrology #Ciliopathies #cilia #Science #Conference #RareDiseases #Kidney #Biology #Flagella #PCD #ADPKD #BBS #NPHP #CKD #PKD -
German researchers welcome national, EU support for gene therapy research https://www.euractiv.com/section/health-consumers/news/german-researchers-welcome-national-and-eu-support-for-gene-therapy-research/?utm_source=dlvr.it&utm_medium=mastodon #genetherapies #Germany #rarediseases
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German researchers welcome national, EU support for gene therapy research https://www.euractiv.com/section/health-consumers/news/german-researchers-welcome-national-and-eu-support-for-gene-therapy-research/?utm_source=dlvr.it&utm_medium=mastodon #genetherapies #Germany #rarediseases
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EU needs to step up to unleash gene therapies potential, stakeholders say https://www.euractiv.com/section/health-consumers/news/eu-needs-to-step-up-to-unleash-gene-therapies-potential-stakeholders-say/?utm_source=dlvr.it&utm_medium=mastodon #ATMPs #genetherapies #rarediseases