Watch the recording of our May #ELSIFridayForum: Value and Values in Payment for #Gene Therapies, with Renske ten Ham, Brett McQueen and Hadley Stevens Smith 🎦 Watch here: ow.ly/yJuJ50OuSNO

Stanford University is looking for caregivers/family members of adults with Down syndrome to participate in a 60-90-minute focus group over Zoom about their experiences with health care, aging, and dementia. Complete this form if you are interested: redcap.link/srsdskxw

This is going to be a great talk for anyone interested!

Really awesome #internship opportunity for undergrads interested in #bioethics. Spread the word! Stanford Center for Biomedical Ethics (SCBE)

Register now for the year's final #TeamScience Tuesday on June 6! UW Health | Carbone Cancer Center's @betsyrolland will present "The impact of academic culture on interdisciplinary collaboration"! bit.ly/3N5umju

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 UDN UDN PEER Undiagnosed Diseases Network Foundation (UDNF) Udninternational lnkd.in/gmx99WNe

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 UDN Undiagnosed Diseases Network Foundation (UDNF) Effie Parks National Organization for Rare Disorders (NORD) Global Genes

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.

Highlighting an #ethics researcher among the top ten scientists to watch is awesome Science News , and you couldn’t have picked a better one! So grateful to have the fabulous Daphne Martschenko, PhD as a colleague at Stanford Center for Biomedical Ethics (SCBE) !

Really honored to have our work on #raredisease #advocacy and #equity included in this issue of The American Journal of Bioethics, and grateful to all those who took the time to write such thoughtful commentaries! Holly K. Tabor, PhD Colin Halverson Hadley Stevens Smith Emily Bonkowski and many others.

In response to Stephanie Morain and Emily Largent's recent article on #ethics and pragmatic trials in The American Journal of Bioethics, Nate Olson and I argue that the issues raised are relevant in many other domains, including #raredisease research. tandfonline.com/eprint/CUCJCEU…

To often our adult patient with rare conditions are left out of the conversation. Thanks Stephanie Fischer for doing this!

The UDN PEER lectures never disappoint! Join next week for a conversation with Isaac Kohane about #ArtificialIntelligence and #healthcare. Chan Zuckerberg Initiative National Organization for Rare Disorders (NORD) Stanford Medicine Stanford Center for Biomedical Ethics (SCBE) Global Genes Undiagnosed Diseases Network Foundation (UDNF)

With Hadley Stevens Smith and @tara_lavelle steering the ship, it's no surprise that this special issue of Clinical Therapeutics has some really great papers for researchers interested #ethics and #Genetics. Check it out! ELSIhub | CERA Stanford Center for Biomedical Ethics (SCBE)

Watch the recording of our September #ELSIFridayForum: "Fair Access and Equity of Individualized Interventions for Ultrarare Genetic Conditions" with Dr. Alison Bateman-House, Ingrid Holm and Meghan Halley 🎬 Watch here: ow.ly/HGef50PMfLe

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: ow.ly/aqVq50QMgmx