Christine Von Raesfeld, Patient Advocate

Christine Von Raesfeld, Patient Advocate Christine is a patient advocate/citizen scientist working to advance precision medicine, rare disease research, and AI rights.

She collaborates with leading organizations to amplify patient voices & promote ethical data use, transparency, & empowerment. donate here: https://www.paypal.com/donate/?hosted_button_id=C7PDAZWRZUWGS

More and more, I hear people talking about   as if it's the solution to all of healthcare's problems.For many conditions...
06/15/2026

More and more, I hear people talking about as if it's the solution to all of healthcare's problems.

For many conditions, AI has enormous potential. It can identify patterns, process information at scale, and help connect dots that humans might miss.

is different.

Recently, two student teams in Stanford's GENE 240 course analyzed my case using very different approaches. What stayed with me wasn't which team was right. It was the realization that AI can only work with the knowledge we already have.

In rare disease, the challenge isn't always finding a pattern. Sometimes the pattern hasn't been discovered yet.

That's why I believe the future of personalized medicine isn't AI alone. It's patients, clinicians, researchers, and technology working together to create new knowledge and better answers.

A huge thank you to everyone who has invested their time and expertise in working on my case. I'm excited to see where this work leads and hopeful that what comes from it may help others who are still searching for answers.

Had a great time volunteering at the Santa Clara Night Market with the Parade of Champions team. Being there and seeing ...
06/08/2026

Had a great time volunteering at the Santa Clara Night Market with the Parade of Champions team. Being there and seeing our community come together made me wish we had things like this when I was a kid But also so proud to see our city grow. Have you attended any of the city of Santa Clara events lately?

Our Lady of Peace has been part of my life since I was a kid, and it is a place that has always grounded me. Growing up ...
05/30/2026

Our Lady of Peace has been part of my life since I was a kid, and it is a place that has always grounded me. Growing up Catholic, I was taught to think deeply about ethics, moral responsibility, and what it means to honor the dignity of every human being. Those values shaped how I see the world, and they are often the very things I worry get left out of conversations about AI.

These are just some of the many reasons why this event resonates with me. Seeing a dialogue on human dignity, ethics, and AI take place in my hometown, and in a church that holds so much personal meaning, feels incredibly powerful.

If you are in the area and care about how technology intersects with humanity, faith traditions, and the moral frameworks that guide us, I hope you will join the conversation. These are the kinds of discussions that help shape a future where people, not systems, remain at the center.

What happens when the medical record the system is matching against does not fully reflect the patient?As healthcare inc...
05/21/2026

What happens when the medical record the system is matching against does not fully reflect the patient?

As healthcare increasingly turns to AI and electronic health records to identify patients for clinical trials, I keep coming back to one question:
Does our medical data actually tell the full story of our health?

đź“–Read the full piece on my . Link in bio.

The NHL/NHLPA Innovation Competition is coming to SAP Center on June 1, and it’s a real chance for   students to shape t...
05/19/2026

The NHL/NHLPA Innovation Competition is coming to SAP Center on June 1, and it’s a real chance for students to shape the future of hockey.

Here’s what to know:

The event:
Students will present their own ideas and innovations for the sport.

The audience:
Leaders from hockey, tech, and industry who are actively looking for fresh thinking.

The opportunity:
A platform to influence how the game evolves and to get noticed.

The deadline is close:
Sign‑up closes April 26.

If you know a student who wants to make an impact, send this to them.

NHLInnovationSanJose

I’m looking forward to speaking at this year’s DIA Global Annual Meeting and contributing to critical conversations in l...
05/18/2026

I’m looking forward to speaking at this year’s DIA Global Annual Meeting and contributing to critical conversations in life science innovation.

This meeting brings together regulators, industry leaders, patients, academics, emerging innovators, and global stakeholders to tackle the real challenges shaping drug development today — from AI and innovation to regulatory strategy and global collaboration.

If you’ll be there, I’d love to connect. And if you haven’t registered yet, I encourage you to join us.


More: https://echo.walls.io/ct2Qz87

Leadership isn’t about being the loudest voice.  It’s about creating space for others to be heard.My grandfather lived t...
05/15/2026

Leadership isn’t about being the loudest voice.
It’s about creating space for others to be heard.

My grandfather lived that every day during his twenty‑five years as Santa Clara’s City Manager. He worked with mayors from across the political spectrum, and what people still talk about is his fairness, his listening, and the simple “Ground Rules” he kept on his desk.

Check out my substack for the full piece. https://open.substack.com/pub/christinevonraesfeld/p/the-binder-on-my-grandfathers-desk

What Ground Rules do you live by?

The Asian American Story Contest began as a response to anti-Asian hate, but it has become something just as important: ...
05/12/2026

The Asian American Story Contest began as a response to anti-Asian hate, but it has become something just as important: a space where our stories bring people together instead of pushing us apart.

On Saturday, I got the chance to celebrate this year's winners alongside my community. As someone who’s half Filipino, I cherish these opportunities.

For most of my life, I’ve felt caught between worlds. Not Asian enough. Not American enough. Never fully fitting into either space.

That’s why these Asian American Stories means so much to me. There’s comfort in being around people who understand parts of your experience without needing a long explanation. Even when our stories are different, there’s still connection. The room feels open, welcoming, and real.

Every year, this event reminds me of the same thing: all of us belong right here. Our stories,our voices and our presence matters.

If you haven’t seen the videos from this year’s competition yet, I hope you’ll take the time to watch them. The stories people shared were honest, vulnerable, and deeply personal. They’re a reminder of why spaces like this matter and why continuing to tell our stories is so important.

Grateful to those who had the courage to share theirs.

May is Lupus Awareness Month.If you live with lupus, or know someone who does, you already know that the awareness conte...
05/04/2026

May is Lupus Awareness Month.
If you live with lupus, or know someone who does, you already know that the awareness content out there rarely tells the full story.

I'll be posting facts and information about Lupus on each day with a weekly wrap up here at the end of each week simply because . đź’ś

If you're interested in joining OHC, check out the link in my bio or DM me for info.

If you got a surprise party invite from me… surprise, it wasn’t actually from me. My Google account was hacked so please...
05/01/2026

If you got a surprise party invite from me… surprise, it wasn’t actually from me. My Google account was hacked so please ignore it while I fix things.

Once I do, maybe we should throw a real party.

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Santa Clara, CA

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