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Christine Von Raesfeld, Patient Advocate

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Santa Clara, CA
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

04/17/2026

I woke up today with a feeling of nervousness and excitement. We’re wrapping up the core part of at Stanford University School of Medicine, a three week intensive course using agentic AI and multiomic data to work through complex patient cases. The teams will present their reports, and then continue working with the data and tools over the next couple of months.

I’ve been part of this experience in a very personal way. My own case was one of the ones students worked on, and I was able to join sessions and engage directly with the teams.

What excites me is how differently each group approached the same data. Different tools, different ways of thinking, different conclusions, all evolving over multiple iterations.

For the most part, students were working from data alone. We chose not to include my full medical record, though I shared pieces when needed, most of the information which shared through my patient story.

This course made me think. AI can move through data quickly and generate ideas, but it doesn’t know the full picture, The things not stated in any of the data or medical records.

What's stood out most, were the conversations. Being able to answer questions, add context, and connect the data to real experience.

It makes me wonder how effective AI can really be in complex care if the patient is not part of the process.

Excited to share what comes out of this and how it will help guide conversations with my care team. One thing is clear, if we want AI to actually support patients, they need to be part of the work, and not just the input. 💜

04/16/2026

A couple of weeks ago, I had the chance to spend time with some new (and old) friends at the Camden Coalition Regional Advisory Committee (RAC) meetup ahead of the upcoming conference here in the .

This all spun from a conversation with Tom Norris about some of the challenges in navigating my own care. He connected me with Evelyne Kane, MPH, and that conversation sparked a deeper interest in their work, eventually ending with an invitation to join the RAC.

What stood out most at the meetup was how grounded the group is in the realities people are actually facing, and the genuine commitment to doing things differently.

The upcoming conference in Oakland will bring together people across healthcare, social services, and community organizations working to better support individuals with complex needs.

If this is work you’re thinking about or already doing, I’d encourage you to take a look and consider joining us. 💜

04/14/2026

Back in January, I had the pleasure of speaking with Philips as a thought leader in the and space. Now, that conversation is part of something bigger.

The Philips Future Health Index 2025 is out, and the findings hit close to home. As a rare disease patient, I have lived the trust gap this report documents. The more we know about AI, the more we need systems that actually protect us.

Watch the video and read the full report. https://www.philips.com/a-w/about/news/future-health-index/reports/2025/building-trust-in-healthcare-ai

04/14/2026

More and more, I’m choosing what to read based on whether I can listen to it.

Part of that is practical. I’ve been having some issues with my vision lately. And it’s made me think a lot more about how people with vision challenges (and other disabilities) actually access information.

I process things so much better when I can hear the words and see them at the same time. So I started publishing my posts with an AI voice option.

It’s surprisingly easy to turn on (once you know where to go):

Dashboard → Website Editor → open post → voiceover settings

Once it’s on, there’s a play button at the top of your post in the app.
It’s a small shift, but it makes these posts a lot more usable in real life, not just in theory.

If you’re writing on Substack, it’s worth a try, if you're not already using it.

Are you on substack yet?

04/10/2026

In healthcare, I’ve often said: my data is my song. And I don’t say that lightly.

A recent post by Natalie Nicholson titled, "But I Wanted To Be A Famous Guitar Player!" hit something I’ve been trying to articulate for years and echoed that idea in a different, but very real context; re-enforcing my own thought processes around data "ownership" and what that means.

As a patient, my data isn’t abstract. It’s my body, my history, my uncertainty, my hope. It’s the closest thing to a record of what it means to live in this body. I may not have “composed” it the way a musician writes a song, but it is still uniquely mine.

What’s been unsettling is watching how easily that “song” gets used. Shared, analyzed, trained on. Often without me ever being in the room, credited, or even aware.

Reading this, I kept thinking we’ve already seen this story play out in music. Questions of ownership, attribution, consent, and value didn’t start with AI. They’ve just taken on a new form. And now healthcare is stepping into that same tension, except the stakes feel so much more personal.

I’ve been sitting with this idea for a long time, and I’m finally starting to write it down. What it means for patients when our “songs” become data, and whether the systems we’re building actually respect that.

Interested in how others are thinking about this. 💜

04/08/2026

The technology that monitors our health has never been more advanced. But getting care after something is flagged? That's a different story. Check out my latest substack to read more.

If a health related device or monitor flagged something today, how long would you expect to wait for treatment or care?

04/03/2026

If you or someone you love is living with or , we'd love to have you join us for a free, welcoming event hosted by ImYoo and AminoChain. Come as you are; whether you're newly diagnosed, years into your journey, or just simply looking for community.

We'll be sharing exciting updates on research that's built around you, talking honestly about what it looks like to take part in a study, and most importantly - making space to connect with others who get it. No medical jargon, no pressure, just real conversation.

Because you deserve to be at the center of your care. And you deserve a community that shows up for you. 💜

Message us for details

04/01/2026

I'm a patient. I'm also a case study. And I couldn't be more proud of that.

I'm participating in Stanford's GENE 240 course, where researchers are using AI agents to analyze multiomics data. The entire course is built around two patient cases. One of them is mine.

I shared my data with this course under my own specific agreements, negotiated on my terms. That distinction matters more than it might seem. For too long, patients have been passive sources in the research pipeline, our data extracted and analyzed somewhere downstream, disconnected from the decisions being made about it. What's different here is agency. I knew what I was sharing, why, and under what conditions.

What moved me most, though, was realizing how seriously this team takes patient safety. These researchers aren't just interested in the data. They have my wellbeing in mind as they work with it. That kind of ethical grounding is exactly what responsible AI-driven research should look like, and it's not something we should take for granted.

Here's what I believe: when patients have genuine agency over their own data and the ability to share it on their own terms, we unlock a kind of innovation we've never seen before. Not because the data is new, but because the relationship is. Patients become partners. And partners push things forward in ways that passive subjects never can.

I'm genuinely excited to see what these students discover over the course of the quarter, and equally hopeful that this model of patient-engaged, safety-conscious research becomes the norm rather than the exception.

If you're a researcher, an advocate, or a patient thinking about data sharing, I'd love to hear how you're navigating this space. The conversation is just getting started.

03/24/2026

If you or someone you love is living with Myasthenia Gravis 💜

At an MGFA Community Health Event this past week, one thing hit home: there isn’t enough research yet...

but we can change that.

There’s now an opportunity to contribute to MG research from home with

Learn more + get involved. Link in bio or copy+paste from the next comment.

Please share 🤝

03/23/2026

If you or someone you love is living with , I wanted to share something important.

At a recent MGFA Community Health Fair, which featured the latest resources, medical advances, and wellness options available to people living with MG one message hit home: there isn’t enough research yet...
But, we can change that.

I’ve been working with AminoChain to help raise awareness about a remote, at-home research registry for people living with . This isn’t a clinical trial, it’s a way to contribute to research from home helping researchers better understand MG and to begin to close that research gap.

While I, personally don’t have MG, I do live with complex, still-undiagnosed conditions and I know how much this kind of research matters.

Learn more or sign up here.↘️
https://aminochain.io/mg-study?utm_source=Christine&utm_medium=social&utm_campaign=Myasthenia%20Gravis%20study

03/17/2026

I almost ignored it.

Just another recruiter message… right?

But something felt off.

They described my experience
better than I could myself.

That’s what made me stop.

So I replied.

Same person.
Multiple numbers.
Text-only hiring.

🚩🚩🚩

I called the company.

It wasn’t real.

And that’s the scary part.

Because it looked real enough to believe.

If you’re job hunting right now — be careful who you trust.

This is happening more than you think.

03/17/2026

If you're at Stanford, here's your open invitation to study me! 😉

I’m one of two patient cases featured in Stanford’s new course.

Students get hands-on experience with real multi-omic data using AI and modern bioinformatics tools and this course is the first place I’m sharing some of my own data.

Being able to contribute like this feels meaningful. It's a part of my legacy, and something that truly excites me.

The courses free for Stanford students and faculty, so check it out. Hoping access to this course and the information provided expand more broadly over time. 💜

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Who I am...

Founder/CEO of People with Empathy, Christine Von Raesfeld is a leader in bringing a critically needed patient perspective to cutting edge medical innovations. Committed to providing patients with chronic and rare diseases with the support they need, Christine works with patient advocacy organizations, industry representatives, and individual patients and their loved ones. Living with many rare and chronic diseases, she believes that in order to foster understanding and empowerment, patients must be treated as people first. As a patient involved in Stanford's Humanwide program, she speaks on the benefits and advantages of precision medicine, with a special interest in pharmacogenomics.

Christine’s drive to make lives better for patients has been nationally recognized. In 2019, she spoke on stage at the Startup Health Festival as an invited guest of Sanguine Biosciences. In 2018, Christine served on the Team of Patient Advisors for PatientsLikeMe. She was also recognized as a Wego Health 2018 Top 10 Healthcare Collaborators Patient Leader as well as named one of Silicon Valley Business Journal's 100 Women of Influence for 2019. On the community side, Christine currently serves as a Board member of More than Lupus and DBSA California in addition to being an advisor to HAS (Health Advocacy Summit), a patient advocacy organization. She also volunteers her time with RDLA and sits on the Community Congress for Everylife Foundation She is a driving force among collaboration within the healthcare community and is committed to breaking down silos in healthcare. She provides an honest patient perspective at conferences which helps companies advance their patient-centered initiatives and has contributed to several white papers and podcasts on the topic.

Christine’s conference speaking engagements, consulting efforts, and ability to share her personal experiences have allowed her to bring a much needed change to the healthcare industry while bridging the gap between stakeholders.