Author | Lightnews

Cvonraesfeld @undiagnosed2.bsky.social · Jul 26

I've gotten multiple calls lately asking to complete a survey on my political views. none of the companies could identify where my information was going or even where the survey results would have been published. I respectfully declined, but wondering, what would you do? #trust #marketing

an old black telephone with a cord attached to it is sitting on a white surface .

Alt: an old black telephone with a cord attached to it is sitting on a white surface .

media.tenor.com

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Cvonraesfeld @undiagnosed2.bsky.social · Jun 15

Thanks @stanfordhai.bsky.social for including @lightcollective.bsky.social in the #HAIPolicyWorkshop. As co-authors of the #AIRightsInitiative Andrea, Isabel & I were glad to bring the #PatientVoice to discussion.

How can we build AI that earns trust, respects autonomy & reflects real lives?

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Cvonraesfeld @undiagnosed2.bsky.social · Jun 2

No Aggregation Without Representation isn’t just a motto, it’s a demand for patient voices in AI-driven healthcare. At the recent CA Assemblly hearing on GenAI, I was able to provide testimony for @lightcollective.bsky.social AI must serve people, not just institutions. #NothingAboutUsWithoutUs.

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Cvonraesfeld @undiagnosed2.bsky.social · May 21

Happy #ClinicalTrialsDay! Today, we celebrate the incredible researchers, participants, and advocates who make medical breakthroughs possible. Every discovery starts with those willing to take a step forward!
#Reasons4Research #StandUpForScience #MedicalAdvancement

Cvonraesfeld @undiagnosed2.bsky.social · May 5

Mind what you have learned. Save you it can.

Yoda

#MayThe4th #StarWars #Capcut #Canva #Algenerated

Cvonraesfeld @undiagnosed2.bsky.social · May 2

Is anyone else concerned about Palantirs access to the All of Us Research database, especially given the recent contract with ICE? www.axios.com/local/denver...

ICE pays Palantir $30M to build new tool to track and deport immigrants

The Denver-based data software giant is building a tool to provide ICE with enhanced capabilities to support deportation efforts, federal documents show.

www.axios.com

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 28

At the recent #FestivalOfBiologics, I presented on transforming #RareDisease research. I shared how giving patients access & control over their #HealthData can bridge research to clinical care & how tools like #GenomicMapping can lead to new discoveries and personalized treatments. #FutureOfHealth

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 28

AI can be both ethical and innovative but we must consider those who we are trying to help. Check out the AI Rights Initiative and our thoughts as patients regarding the use of #AI. @lightcollective.bsky.social @downing.bsky.social lightcollective.org/patient-ai-r...

Light Collective - Patient AI Rights Initiative

It is time for patients to lead change to advance the rights, interests, and voices of patients in health AI. Several prominent national initiatives have emerged focused on developing guidelines f…

lightcollective.org

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 21

They announced it towards the end. 💜

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 21

With the way people talk about these rallies, I'm not sure angry is the right word to use. They don't look angry to me. They look like they're doing it peacefully. 💜

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 21

Good catch! It should say mixed race woman, but I don't think there's a way to edit the alt text on @bsky.app yet. Any tips? 🤔💜

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 20

Over 3,500 people showed up in #SanJose yesterday. Proud to be a part of an amazing community! #WeWillNotBeSilent #ScienceTrumpsAll @50501movement.bsky.social @standupforscience.bsky.social

A race woman with long curly dark hair wearing a tan tank top, blue denim shorts and tennis shoes standing underneath a tree on the grass in front of a crowd holding a sign that says science trumps all

a crowd of people standing on the grass facing a stage. there is an old building in the background and trees around.

4 12 180

Cvonraesfeld @undiagnosed2.bsky.social · Apr 20

I went to Catholic School and was raised in a practicing Catholic family. To see Easter even associated with a post like this is appalling to me and should be for anyone who "claims" to be Catholic. This goes against everything I was taught to believe. 😢

Happy Easter... 💜

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 17

Contribute your perspective & play a role in shaping healthcare quality measures.
✅ Submit a nomination through #PQM
[https://p4qm.org/get-involved]

🕚 Nominations close at 11:59 PM (ET) on May 15, 2025.

Let's ensure that patient voices continue to make an impact!

#CMS #PatientAdvocacy

Cvonraesfeld @undiagnosed2.bsky.social · Apr 17

As part of the Partnership for Quality Measurement (PQM) committees, we need your help to expand our #Patient community. We're now accepting nominations for individuals to join our Pre-Rulemaking Measure Review (PRMR)/Measure Set Review (MSR) and Endorsement & Maintenance (E&M) committees.

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 17

I thought this a long time ago... when they won the contract for the NHS and then the All of Us Research Program, it confirmed my suspicions...😢

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 16

I second this for the US!

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 16

Despite having 40+ #diagnoses in my #EMR, I'm still #Undiagnosed. Help us change that, join my case. 🧬🔬

#RareDisease #PatientAdvocacy #Research #CitizenScience #ClinicalTranslation #PersonalizedMedicine #PrecisionMedicine #Genomics

rttp.stanford.edu/christine

Christine

rttp.stanford.edu

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Cvonraesfeld @undiagnosed2.bsky.social · Apr 16

currently in the process of taking ownership of my own raw T2T data. Would love to get your insights... 🧬

Cvonraesfeld @undiagnosed2.bsky.social · Apr 16

Just registered for May! 🧬

Cvonraesfeld @undiagnosed2.bsky.social · Apr 16

Joïn us Thursday, April 17th at 9AM PT on @linkedin.com for a conversation about one of the most frustrating challenges in #ClinicalResearch today: If #tech is really so smart, why doesn't it work -and how do we fix it?

#ClinicalTrials #ConsuliConversations #OneBurningQuestion

Cvonraesfeld @undiagnosed2.bsky.social · Apr 14

Democratizing data access can unlock breakthroughs, elevate our human potential, and foster accountability, but it is highly dependent on ethical governance and collaboration. check out my latest article and let me know if you agree. What does your vision for the future look like?

Patients And Communities as Catalysts For Progress

A Vision For The Future

open.substack.com

Cvonraesfeld @undiagnosed2.bsky.social · Apr 2

I sent this as both an email and posted openly on social media to California Attorney General Rob Bonta regarding his announcement about 23andMe. Still no response... open.substack.com/pub/christin...

An open letter to Attorney General Rob Bonta

and California residents who have participated in 23andMe

open.substack.com