Connector I Storyteller | PatientPerspective I Speaker I Mentor I Friend I Dedicated to #BreakingSilos in #Healthcare

Silicon Valley
Joined August 2010
Christine Von Raesfeld retweeted
Used 23andMe? Your DNA is being transferred without your opt-in consent. A court-appointed watchdog says that’s a breach of trust. This data isn’t just personal, it’s generational.  Support the Global BioData Trust and demand dignity in DNA. globalbiodatatrust.org/petit…
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Christine Von Raesfeld retweeted
California’s Attorney General is sounding the alarm over 23AndMe’s bankruptcy sale, warning that millions of people’s genetic data may be transferred without proper consent. What do you think about the sale of the 23AndMe Biodata? Read the article here: politico.com/news/2025/06/30…
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💜💜💜 – at Santa Clara, CA
1 in 10 people on Earth are suffering from a rare disease. They’re ignored by the pharmaceutical industry because their condition is “too rare” to be worth tackling. To Big Pharma, they are merely numbers. To us, they’re fathers, mothers, sons, and daughters. They have families, hopes, and dreams. Every time you talk about these diseases, you’re giving them a louder voice. Don’t let them be ignored any longer.
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Christine Von Raesfeld retweeted
Thanks to @undiagnosed_1 and @cvonraesfeld for not only making me aware of rare diseases, but teaching me that curing rare diseases benefits ALL. @endrarediseases is happening on @solana.
1 in 10 people on Earth are suffering from a rare disease. They’re ignored by the pharmaceutical industry because their condition is “too rare” to be worth tackling. To Big Pharma, they are merely numbers. To us, they’re fathers, mothers, sons, and daughters. They have families, hopes, and dreams. Every time you talk about these diseases, you’re giving them a louder voice. Don’t let them be ignored any longer.
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Today is #GivingTuesday. As a Board Member of @BeLikeLight (The Light Collective), I am asking for your help to support our work to advance patient rights, interests & voices in #healthtech We are a 501c3 and your donation is tax deductible. Donate↘️: donate.stripe.com/3cs9EGfKu3… – at Santa Clara, CA
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Christine Von Raesfeld retweeted
Claire Sachs & @cvonraesfeld discuss the need for ethical guardrails for patient #HealthData. From panel discussion "Patient Insights on Health Access, Technology, and Public Policy" at @hdpalooza. @AcademyHealth #healthcare #podcast health-hats.com/pod224
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Christine Von Raesfeld retweeted
"Patient engagement is not a rescue strategy — it’s an initial strategy. Speaking to patients from the very beginning & earning their trust is critical." Our community's patient advocate leaders, @stacy_hurt & @cvonraesfeld offer insights on patient centricity. #CNSSummit2024
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The final MSR Recommendations Report & the MSR Recommendation Spreadsheet, are now available on the Partnership for Quality Measurement website & open for public comment through November 27. Make your voice heard & submit your feedback today! #PQM #CMS linkedin.com/posts/partnersh… – at Santa Clara, CA
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Patient communities need protections on social media platforms. We need regulation of AI. We have launched this new report, co-created by a fantastic network of patient advocacy leaders. Read further here: lightcollective.org/tangled-… #BeLikeLight
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Navigating an $airport w/#InvisibleDisabilities can be overwhelming. The #SunflowerLanyard program helps signal that a person might need extra time/help without constant explanations & helps us feel seen and understood, reducing travel burden. Have benefited from this program? – at Charlottesville, VA
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Christine Von Raesfeld retweeted
Report includes an example of how a company could use a person's activities off the platform for targeted advertising: /6
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Join us and @MayaRockeymoore as we share the findings from our community-led survey about patient safety issues online. academyhealth.confex.com/aca… #WPSD24 #hdpalooza.
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The 70's called they want their safety laws back! Join us next week for World Patient Safety Day on September 17th in DC. (#WPSD2024) We're joining up with @AcademyHealth and @pfps_us to advance digital rights / health privacy of patients next week. #BeLikeLight #Hdpalooza
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Christine Von Raesfeld retweeted
FDA is warning consumers not to purchase or use Umary & Amazy products, marketed as dietary supplements, as they may be harmful due to potentially dangerous hidden drug ingredients not listed on the product label. Talk to your HCP with concerns: fda.gov/drugs/drug-safety-an…
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President Biden and I are proud to announce that Medicare has reached agreements with the manufacturers of all 10 drugs selected for price negotiation. This means lower health care costs for millions of Americans — and we aren't stopping here.
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Christine Von Raesfeld retweeted
Today is #SocialMediaDay. Patient communities need safe spaces online. #BeLikeLight
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