Christine Von Raesfeld, Patient Advocate

03/09/2026

Over a century ago, Elizabeth Blackwell -the first woman to graduate from medical school in modern times said it best: "It is not easy to be a pioneer - but oh, it is fascinating! I would not trade one moment, even the worst moment, for all the riches in the world."

The women in healthcare today are still proving that true every single day.

Whether you're fighting for patient rights, protecting health data, doing the research, or holding space for communities that the system has failed, your work is the foundation of everything we are building together.

This International Women's Day, we are standing with you, learning from you, and proud to be in this fight alongside you. The work continues, and we're glad you're in it with us.

\

03/04/2026

Not sick enough for the emergency room.

Not stable enough to ignore it.

What happens when monitoring technology detects something wrong… but the system can’t see you for weeks?

Read/Listen on the substack app.
https://christinevonraesfeld.substack.com/p/ed-versus-ai-waiting-for-answers

03/01/2026

There is something surreal about seeing your own diagnostic journey show up in a peer-reviewed journal.

Yesterday, on , the second paper connected to my case was published.

It's important to note, that this work is not funded. Researchers are giving their time and expertise because they believe the questions matter and that research should not live separately from care. I am deeply grateful for the rigor, seriousness, and integrity they have brought to work that did not come with a grant or mandate.

Publication is a milestone, but it is also part of an ongoing process.

We continue to build on this evidence and will work closely with my own physicians to translate the results into clinical care; taking the time to evaluate what it means, where its limits are, and how it can responsibly inform my treatment.

Though this began with my own case, the gap between research and real-world care is much broader. Too often, evidence lives in journals while decisions are made in exam rooms. For me, this work has always been about narrowing that distance.

02/28/2026

Rare Disease Day looks different for me this year.

My heart had other plans, so I’m cheering from home instead of DC. That pause gave me space to look back.

My dad recently found this footage from one of my plasma pheresis treatments in my twenties. It’s just five minutes — a small window into fourteen years of unpredictable care.

I wrote more about what that lifetime has taught me. ⬇️
https://substack.com//note/c-221156090?r=33b6l9


Video/DadJokes cred: Don Von Raesfeld

02/27/2026

Do you have access to your own genomic or advanced biological data?

Ten years ago, most patients didn’t. Now some of us do.

That changes the landscape. Data that begins in our bodies can move into research systems, development pipelines, even protected applications.

I’ve been thinking about what that means.

Link in bio if you want to read more.

02/19/2026

Has anyone else ever cried while drafting an article? This was a really difficult one to write. I hope it resonates with whoever it needs to resonate with. 💜

"When an illness is invisible, data becomes your voice.'

Read here or Listem in the Substack app;

https://open.substack.com/pub/christinevonraesfeld/p/when-an-illness-is-invisible-data?utm_source=share&utm_medium=android&r=33b6l9

How a small patch saved my life

02/18/2026

龙马精神 (Lóng mǎ jīng shén): Wishing you great energy and spirit

This year carries the energy of the Horse. Strength, movement, courage, and the reminder that our stories are meant to keep going.

Growing up in the with a mixed Asian background shaped so much of how I see community. Asian American history is everywhere here, and it’s part of the environment that raised me. The traditions, the stories, and the people all influenced how I show up and why I care so deeply about our community.

Storytelling has always helped us understand where we come from, which is why I appreciate the work Ding Ding TV - Silicon Valley Innovation Channel does with the Asian American Stories Video Contest. This year’s theme is Coming to America, and The deadline to submit is March 15th. you can find more details here: https://www.aastories.org

I had the honor of being one of the selected winners in 2020, and that experience reminded me how powerful it is when our stories are seen and heard. Thank you to Diana Ding and Joel Wong for their leadership and for creating this space year after year.

Here’s to movement, courage, and the stories that carry us forward.

02/17/2026

Lately, my information hasn’t just been “out there.” It’s been finding its way back to me.

Have you been experiencing an influx of spam and fraud attempts? Share your experience in the comments and read the full piece on substack.
https://open.substack.com/pub/christinevonraesfeld/p/when-your-data-finds-you

02/17/2026

Your data fuels the system.

Does it feel like exchange or extraction?

Vote below. Read more in my latest Substack. Link in bio.

02/15/2026

Happy Valentine’s Day! 💜

Dating with comes with fears, calculations, and courage most people never see. If you’ve ever felt like too much or not enough, this one’s for you.

Read the full piece on my Substack.

What has dating with chronic illness looked like for you? 💜

02/14/2026

I’m mixed race (Filipino, German and Irish) and I’ve spent my life living in the in between.

Now, as I navigate illness, I’m seeing how often healthcare still relies on categories that don’t fully reflect who we are.

I wrote more about this in my latest Substack. https://substack.com//note/p-187864365?r=33b6l9

I’m curious:

• Are you mixed race?
• Has it ever impacted your medical care or how you’re seen in the system?

02/11/2026

It's rare disease month and as patient-facing AI tools become more integrated into healthcare, I find myself at a crossroads.

As someone living with rare disease, I am not looking to enter “symptoms” into a chatbot. I am looking at mutation clusters, genomic variants, biomarker panels, and longitudinal data. This is the reality of my care.

has the potential to help interpret complexity at a scale no human can. That excites me.

But rare disease data is not generic information.

Genomic data is deeply personal, often identifiable, and connected to family members. Once it is entered into an open platform, control becomes unclear. How long is it stored? Who can access it? Is it used to train future systems? Can it ever truly be deleted?

Innovation without governance does not feel empowering. It feels risky.

Patients like me are being encouraged to use tools that are evolving faster than the guardrails around them.

So here is the question I keep coming back to:

Who should patients trust with their most sensitive biological data?