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Cvonraesfeld

@undiagnosed2.bsky.social
158 followers 267 following 34 posts

Just a girl trying to survive US health care... I lost access to my previous account, cvonraesfeld. Until that gets resolved, follow me here. 💜

PostsRepliesMedia
Cvonraesfeld @undiagnosed2.bsky.social · 26/07/2025
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
media.tenor.com
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 .
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Cvonraesfeld @undiagnosed2.bsky.social · 15/06/2025
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 · 02/06/2025
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 · 21/05/2025
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
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Cvonraesfeld @undiagnosed2.bsky.social · 05/05/2025
Mind what you have learned. Save you it can. Yoda #MayThe4th #StarWars #Capcut #Canva #Algenerated
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Cvonraesfeld @undiagnosed2.bsky.social · 02/05/2025
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...
axios.com
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.
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Cvonraesfeld @undiagnosed2.bsky.social · 28/04/2025
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 · 20/04/2025
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 alla crowd of people standing on the grass facing a stage. there is an old building in the background and trees around.
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Cvonraesfeld @undiagnosed2.bsky.social · 20/04/2025
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 · 17/04/2025
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 · 16/04/2025
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
rttp.stanford.edu
Christine
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Cvonraesfeld @undiagnosed2.bsky.social · 16/04/2025
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
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Cvonraesfeld @undiagnosed2.bsky.social · 14/04/2025
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?
open.substack.com
Patients And Communities as Catalysts For Progress
A Vision For The Future
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Cvonraesfeld @undiagnosed2.bsky.social · 02/04/2025
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...
open.substack.com
An open letter to Attorney General Rob Bonta
and California residents who have participated in 23andMe
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Reposted by Cvonraesfeld
Rosemary Mosco @rosemarymosco.com · 20/03/2025
Look I have zero excuses for this, but the idea popped into my head and now it's in your head, sorry
A six panel comic. In panel 1, a yellow warbler says "Hey, so I'm going to go out on a limb here". For the next four panels, it hops down along a branch. In the last panel, at the end of the branch, it sings a little song. I'm sorry.
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Cvonraesfeld @undiagnosed2.bsky.social · 06/02/2025
Does anyone know if they've re-instated public communication with the #CDC yet? Just got a text message from CVS to get my hepatitis b #vaccine... #Healthcare #patient
screenshot of a text message from CVS pharmacy.
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Cvonraesfeld @undiagnosed2.bsky.social · 28/01/2025
Just completed my abstract reviews for AcademyHealth ARM25! In awe of the research being conducted & excited to return as co-lead for the "Individuals living w disability or other complex conditions" track and to share my own experiences as we navigate this new landscape. ➡️ academyhealth.org/ARM
close up image of a computer screen showing completed work.
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Cvonraesfeld @undiagnosed2.bsky.social · 26/01/2025
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Cvonraesfeld @undiagnosed2.bsky.social · 26/01/2025
I just shared a link on my social media platforms to follow me here. leave a comment if you're here from it. 💜
media.tenor.com
neon sign that says welcome in a circle on a brick wall
Alt: neon sign that says welcome in a circle on a brick wall
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Cvonraesfeld @undiagnosed2.bsky.social · 25/01/2025
Fund patient support groups trying to migrate off Meta. lightcollective.org
lightcollective.org
Light Collective - No Aggregation Without Representation
We are a nonprofit on a mission to help peer support groups foster healthy human connections on the internet. We provide tools, resources, and training for patient peer support group leaders to practi...
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Reposted by Cvonraesfeld
Andrea @downing.bsky.social · 22/01/2025
#bcsm #medsky #chronicillness #disability
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Cvonraesfeld @undiagnosed2.bsky.social · 22/01/2025
For anyone following me @cvonraesfeld.bsky.social I was locked out of my account, but didn't want to miss the party so here I am. 🎉
image of a mixed Filipino woman with dark curly hair wearing a pink dress and holding a microphone on stage with two banners behind her.
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