Cvonraesfeld
@undiagnosed2.bsky.social
Just a girl trying to survive US health care...
I lost access to my previous account, cvonraesfeld. Until that gets resolved, follow me here. 💜
I lost access to my previous account, cvonraesfeld. Until that gets resolved, follow me here. 💜
Pinned
Cvonraesfeld
@undiagnosed2.bsky.social
· Apr 16
Christine
rttp.stanford.edu
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
#RareDisease #PatientAdvocacy #Research #CitizenScience #ClinicalTranslation #PersonalizedMedicine #PrecisionMedicine #Genomics
rttp.stanford.edu/christine
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
July 26, 2025 at 6:02 PM
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
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?
How can we build AI that earns trust, respects autonomy & reflects real lives?
June 15, 2025 at 10:09 PM
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?
How can we build AI that earns trust, respects autonomy & reflects real lives?
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.
June 2, 2025 at 4:36 PM
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.
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
#Reasons4Research #StandUpForScience #MedicalAdvancement
May 21, 2025 at 6:20 AM
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
#Reasons4Research #StandUpForScience #MedicalAdvancement
May 5, 2025 at 9:42 AM
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
May 2, 2025 at 3:58 PM
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...
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
April 28, 2025 at 8:51 AM
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
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
April 20, 2025 at 8:35 PM
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
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... 💜
Happy Easter... 💜
April 20, 2025 at 8:20 PM
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... 💜
Happy Easter... 💜
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.
April 17, 2025 at 8:54 PM
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.
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
#RareDisease #PatientAdvocacy #Research #CitizenScience #ClinicalTranslation #PersonalizedMedicine #PrecisionMedicine #Genomics
rttp.stanford.edu/christine
Christine
rttp.stanford.edu
April 16, 2025 at 9:30 AM
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
#RareDisease #PatientAdvocacy #Research #CitizenScience #ClinicalTranslation #PersonalizedMedicine #PrecisionMedicine #Genomics
rttp.stanford.edu/christine
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
#ClinicalTrials #ConsuliConversations #OneBurningQuestion
April 16, 2025 at 8:45 AM
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
#ClinicalTrials #ConsuliConversations #OneBurningQuestion
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
April 14, 2025 at 8:11 PM
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?
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
April 2, 2025 at 3:43 AM
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...
Reposted by Cvonraesfeld
Look I have zero excuses for this, but the idea popped into my head and now it's in your head, sorry
March 20, 2025 at 3:39 PM
Look I have zero excuses for this, but the idea popped into my head and now it's in your head, sorry
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
February 6, 2025 at 3:51 AM
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
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
➡️ academyhealth.org/ARM
January 28, 2025 at 8:32 AM
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
➡️ academyhealth.org/ARM
We are so thankful to be partners with you on the research we co-created this year.
Thank YOU for all that you do.
Happy Thanksgiving!!! 🍁🍽
#belikelight #medtech #bcsm #medsky
lightcollective.org/tangled-in-t...
Thank YOU for all that you do.
Happy Thanksgiving!!! 🍁🍽
#belikelight #medtech #bcsm #medsky
lightcollective.org/tangled-in-t...
Light Collective - Tangled In The Web:
Visit the post for more.
lightcollective.org
January 26, 2025 at 7:12 PM
I just shared a link on my social media platforms to follow me here. leave a comment if you're here from it. 💜
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
media.tenor.com
January 26, 2025 at 5:54 PM
I just shared a link on my social media platforms to follow me here. leave a comment if you're here from it. 💜
Fund patient support groups trying to migrate off Meta. lightcollective.org
January 25, 2025 at 10:09 PM
Fund patient support groups trying to migrate off Meta. lightcollective.org
Reposted by Cvonraesfeld
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. 🎉
January 22, 2025 at 7:01 AM
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. 🎉