Meghan Halley
@Meghan_Halley
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Medical anthropologist, ELSI and bioethics researcher interested in rare and undiagnosed diseases. @StanfordBioethX @UDN_PEER. Views are my own.
Stanford, CA
Joined February 2009
A @NASEM_Health committee is seeking input from anyone impacted by, or interested in, U.S. #NewbornScreening to inform a study on strengthening and modernizing these essential programs. Learn more and sign up here:
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RT @ELSIhub: Watch the recording of our September #ELSIFridayForum: "Fair Access and Equity of Individualized Interventions for Ultrarare G….
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With @hadleyssmith and @tara_lavelle steering the ship, it's no surprise that this special issue of @clinthe has some really great papers for researchers interested #ethics and #Genetics. Check it out! @ELSIhub @StanfordBioethx.
🧬 Special issue of @clinthe on Pediatric Genomic Medicine: Value, Implementation, and Access is out now! . Read all articles summarized in this thread👇🏼 open access. Such a pleasure to serve as a guest editor with @tara_lavelle. Thanks to all authors for their contributions.
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The @UDN_PEER lectures never disappoint! Join next week for a conversation with @zakkohane about #ArtificialIntelligence and #healthcare. @czi @RareDiseases @StanfordMed @StanfordBioethx @GlobalGenes @UDNForg.
Register now for the upcoming @UDN_PEER Book Launch Lecture with Dr. Isaac Kohane. Register here: This lecture will be held on September 6th, 2023 at 4:00 – 5:00 pm ET. All are welcome! #raredisease #undiagnosed #AI #GPT
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To often our adult patient with rare conditions are left out of the conversation. Thanks @RarePOV for doing this!.
Join Stephanie Fischer on our panel "Adult Care in Rare" on September 8th at 2pm!!!
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This is going to be a fun and thought-provoking conversation about #ASO therapies and #RareGenetics diseases. Please join us! @StanfordBioethx.
Register for the next #ELSIFridayForum on September 8th at 12pm: "Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions" with @ABatemanHouse, Ingrid Holm and @Meghan_Halley.
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In response to @SMorain and @emily_a_largent's recent article on #ethics and pragmatic trials in @bioethics_net, Nate Olson and I argue that the issues raised are relevant in many other domains, including #raredisease research.
tandfonline.com
Published in The American Journal of Bioethics (Vol. 23, No. 8, 2023)
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Really honored to have our work on #raredisease #advocacy and #equity included in this issue of @bioethics_net, and grateful to all those who took the time to write such thoughtful commentaries! @hollyktabor @colin_halverson @hadleyssmith @ebonkowski and many others.
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Highlighting an #ethics researcher among the top ten scientists to watch is awesome @ScienceNews , and you couldn’t have picked a better one! So grateful to have the fabulous @daphmarts as a colleague at @StanfordBioethx !.
Science is social, says bioethicist Daphne Martschenko, recently named to @ScienceNews’ SN 10 list of scientists to watch. It is time to come together to disrupt harmful narratives.
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Some days the cognitive dissidence from directly experiencing the worst of our healthcare system while simultaneously being desperately dependent on it for my child’s survival feels like the hardest part.
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Caregivers of children with #RareDisease - do you have experience with, or have you considered, #GeneTherapy for you child? Please consider sharing your stories with this excellent team of researchers @UDNconnect @UDNForg @OnceUponAGene @RareDiseases @GlobalGenes.
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#Undiagnosed patients may enroll in research in hopes of finding a diagnosis. However, our study suggests #ethical challenges related to diagnostic misconception may arise when the lines between research and clinical care blur.
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Come join The Undiagnosed Diseases Network Foundation (UDNF)! We are hiring a Program Director to oversee mission-related activities, including a new Patient Navigation Program. Please apply now! #raredisease @UDNconnect @UDN_PEER @UDNForg @UDNIss
linkedin.com
Undiagnosed Diseases Network Foundation (UDNF) | 2,138 followers on LinkedIn. Improving access to diagnosis, research, and care for all with undiagnosed and ultra-rare diseases. | The UDNF fosters...
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RT @StanfordDeptMed: Register now for the year's final #TeamScience Tuesday on June 6! @UWCarbone's @betsyrolland will present "The impact….
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Really awesome #internship opportunity for undergrads interested in #bioethics. Spread the word! @StanfordBioethx.
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This is going to be a great talk for anyone interested!.
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RT @StanfordBioethx: Stanford University is looking for caregivers/family members of adults with Down syndrome to participate in a 60-90-mi….
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RT @ELSIhub: Watch the recording of our May #ELSIFridayForum: Value and Values in Payment for #Gene Therapies, with .@tenHamR, @brootmcq an….
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