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wenn man 1/2 Jahr über Politiker, Schulbehörde, Krankenkasse+Landkreis wg. (außer)schulische Unterstützung bei schw. chron. Erkrankung rumkaspert, dann ist es normal, dass man dann sagt: ach jetzt brauchen wir das nicht.
=Antwort auf Frage wo Bewilligung bleibt
#RareDiseasesDiesen Thread anzeigen -
400 million people worldwide suffering from 6000-8000 rare diseases and
@irdirc has an ambitious: approval of 1000 new therapies for#rarediseases. Michela Gabaldo at the#1stATSM about enable the eco-system of research and drug development in rare diseases to achieve this goalpic.twitter.com/q0rKeHx4LD
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“There could be a substantially higher number of rare diseases than typically assumed at present, with obvious implications for diagnostics, drug discovery and treatment”. We estimate that there are >10,000
#RareDiseases, many still undefined. https://www.nature.com/articles/d41573-019-00180-y … -
Chance für Netzwerker mit Vertriebsgenen!
#Job#Pharma#KAM#RareDiseases#OrphanDrugs#Nephrologie#SpecialCare#Nordostpic.twitter.com/9ZCIBkanJW -
Misdiagnosis and lack of answers in many, many patients with
#RareDiseases. Dr. Jose Hernandez-Rodriguez from@hospitalclinicpic.twitter.com/yNlYe5mR14
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Personen Alle anzeigen
@RareDiseases National Organization for Rare Disorders (
#NORD) is the voice of the#raredisease community. Official U.S. sponsor of#RareDiseaseDayVerifizierter Account@CheckOrphan CheckOrphan is the leading
#news and information platform dedicated to#rarediseases and#orphandrugs -
SAVE THE DATE!!! SATURDAY, JUNE 13, 2020. Can you believe this will be our 7th Million Dollar Bike Ride to raise money for rare disease research? Time to start training!!!!
#PennMedMDBR2020#rarediseaseresearch#rarediseases pic.twitter.com/9amnINn7S3
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#ejprd#people
Claudio n Virginie at t #Registries 4#Rare#Endocrine Conditions#Workshop,#University of#Glasgow
#rarediseases#scicomm#science#research#patientpic.twitter.com/pw8fkVTnB4
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#AIinHealth: The brain sits on front of the screen, warns Dr Tobias Müller, Head of Digital Transformation at the Rhön-Klinikum AG.#rarediseases#bigdata https://healthcare-in-europe.com/en/news/the-brain-sits-on-front-of-the-screen.html …pic.twitter.com/ze8GUv1ciN
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@JohanPrevot from @ipopi_info wrapping this 13th @Europarl_EN#PID Forum on#NewBornScreening for#RareDiseases including#SCID and offering a#CallToAction @EU_Health @ESIDsociety#ErnRITApic.twitter.com/R4YpFezTyT
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MEP Tudor Ciuhodaru is supporting
#NewbornScrening of#RareDiseases and IPOPI's call to action 'Rare diseases are a human health issue' pic.twitter.com/NVhwRWo18D
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Integrating healthcare and research genetic data empowers the discovery of 49 novel developmental disorders https://www.biorxiv.org/content/10.1101/797787v2 … - impressive work!
#rarediseases pic.twitter.com/RFmfjz0kUF
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We are getting ready for
#EAPWinterMeeting2019! Watch this space the coming days for updates about#medicines for#children,#adolescent medicine,#ChoosingWiselyEurope,#rarediseases,#vaccinations,#research, point of care tests in#pediatric infectious diseases & much more!pic.twitter.com/aa0lugfIpt
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My pain and overall disease deterioration has become so unendurable of late that I’m back on the
#CBD#dryherb again. It makes life possible I suppose but I should be able to get it with THC. It is despicable to deny it to us.#rarediseases#cancerDiesen Thread anzeigen -
Good initiative by
@ICMRDELHI to come up with guidelines for gene therapy product development & clinical trials; Will accelerate research in the development of gene and cell therapies for#rarediseases http://bit.ly/38EbcLr -
FIGHTING RARE DISEASES/ a strategic map to fight rare diseases (resulting from a defective gene)... in medicine there are no outliers, no circumstances rare enough to be ignored; every disease, no matter how rare, needs our attention
#rarediseases#quick_notes_LPpic.twitter.com/nEsLqNWp48
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Today I spoke at a psychiatric liaison conference telling my story in hopes of spreading awareness of loving with a rare chronic disease and working towards a support system for rare diseases.
@fairykate76@Traceywatsonm#positivelyjess#rarediseases pic.twitter.com/CW5QSQ0YgT
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When you’re considering your vote in the
#GeneralElection19 please take the time, if you have any spare, to read through my thread, it’s important - to me if no one else! Thanks so much.#cancer#rarediseases https://twitter.com/MettaFilms/status/1100547147664146432 … -
Join us at the joint @irdirc#REACTcongress 2020 in Berlin
to discuss cutting-edge R&I policy on orphan & #RareDiseases. Early bird registration has been extended until Dec 20, sign up here
http://europa.eu/!HV77fD pic.twitter.com/OJV3FKftVY
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Molekularbiologe Prof. Dr. Salim Seyfried
@unipotsdam forscht im CCMCURE-Konsortium zu#Therapiemöglichkeiten für seltene genetische#Erkrankungen: https://www.gesundheitsforschung-bmbf.de/de/auf-der-suche-nach-einem-medikament-fur-eine-seltene-erkrankung-9662.php …#SelteneErkrankungen#Forschung#UniPotsdam#RareDiseases Foto: K. Fritze pic.twitter.com/mdAr5vvFju
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Dennis Jackman, Senior Vice President, Public Affairs at CSL Behring discusses rare disease drug pricing, patient involvement in the drug development process, and drug access.
@CSLBehring CSL Behring#rarediseases#drugaccesshttps://checkrare.com/orphan-drug-development-pricing-and-access/ …
Das Laden scheint etwas zu dauern.
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