Christine Von Raesfeld, Patient Advocate

11/14/2025

Over the past year, many of us in the patient-advocacy community have seen just how vulnerable our information can be on platforms that track, store, and monetize our data. For communities living with chronic illness - where our stories, symptoms, and support networks often live online - that lack of privacy can create real harm.

We deserve digital spaces that don’t just host us, but protect us.
Spaces that treat our information with care.
Spaces that put community first, not data extraction.

As patients we need platforms that center equity, safety, and belonging, platforms like Our Healthy Community (OHC)

OHC provides something we don’t get on mainstream social media:
✨ Private project spaces where groups can work, organize, and build without fear their conversations will be scraped or tracked.
✨ Connection to a larger ecosystem of organizations, advocates, and resources, so even if you start in a small space, you’re never isolated.
✨ An environment designed for collaboration, not surveillance.
✨ A community that values transparency, consent, and equity.

As we build out the Lupus Space on OHC, we’re creating a place where people can:
💜 share openly without being mined for data
💜 connect with others who understand their journey
💜 collaborate on awareness, advocacy, and support projects
💜 access meaningful opportunities across the broader OHC network

This is about more than changing platforms — it’s about changing expectations.
It’s about choosing digital spaces that respect our humanity, our identities, and our health journeys.

If you or your organization are ready to be part of a community built on trust, transparency, and empowerment, reach out. We will be having a meeting for the lupus community next Thursday to dive deeper into the platform and answer any of your questions.

11/14/2025

Some of my first experiences with industry were through Arena International, back when there were only a handful of patients asking the questions no one else would ask.

I started by sharing my personal story, then moved into conversations around patient recruitment and retention. Now, I’m speaking on co-creation, co-design, and ethical AI, with a focus on holistic care that sees the full person, not just the protocol.

Platforms have grown and topics have changed but my values remain still. Dignity, transparency, and inclusion remain at the core.

Grateful to Arena International for being part of this journey, and for the opportunity to speak at their recent conferences. The future of patient advocacy is data - but it must be data shaped with, not just about, the people it represents.

It’s time for the industry to catch up.

11/02/2025

A heartfelt thank you to the Galeon Foundation for inviting me to attend their first-ever Patient Summit and Gala. It was wonderful to see a full house, a clear sign of growing commitment to ensuring that patients are not just participants, but partners in shaping the future of health.

This event was a powerful step toward true collaboration, co-creation, and co-design, bringing diverse voices together to move from conversation to shared action. The topics were both thoughtful and forward-looking, and I’m especially excited to dive deeper into discussions around the economics of data and how it influences equity, access, and patient empowerment.

Grateful for the Galeon Foundation’s leadership in creating a space where patient voices are heard, valued, and integrated from the start. 💜

10/31/2025

There’s been growing concern about how Meta (Facebook) tracks users. especially in health and patient spaces.

Reports have shown that Meta’s tracking tools, like the Meta Pixel, have been embedded on hospital and patient-portal websites, sending sensitive health data like appointment types and conditions, back to Facebook’s systems. Even private patient groups aren’t always as private as we think.

For advocacy organizations and communities working in health, that creates real risks. We need spaces where trust, consent, and transparency come first.

That’s why I’ve been working with OurHealthyCommunity.com ; a platform designed to give organizations and communities a safer, more ethical place to connect, collaborate, and engage.

We’re now developing a Lupus Space 💜 and looking for 10-29 organizations interested in joining us to co-create this space. Individuals living with lupus or supporting someone who is are also welcome.

If your organization or group would like to be involved, please reach out, t we will be hosting a small group meeting in the coming weeks. Together, we can build safer, more trusted communities for patients everywhere.

Our Healthy Community is a world-class, culturally appropriate web-based collaborative space for underserved faith and community-based organizations to drive equitable partnerships that improve community health outcomes.

10/23/2025

We’re opening our doors! 💡
Join The Light Collective for our virtual Open Office Hours, a space to reconnect, share ideas, and explore new ways to collaborate.

We’ll give quick updates on what we’ve been working on, but mostly, we want to hear from you- what you care about, what you’re curious to learn, and how we can work together to shape the future of digital health, patient rights, and responsible AI.

✨ Whether you’re deeply involved in this space or just curious about what we do, you’re welcome.
Let’s rebuild, reimagine, and grow - together

Register at https://us02web.zoom.us/webinar/register/WN_1UPNapGwTcCW44UxI04TMQ #/registration.

10/16/2025

Protecting your privacy online can feel overwhelming. But we can help! Check out the checklist created by and sign up for our newsletter to find out how you can get involved.

https://lightcollective.org/2025/10/15/cybersecurity-awareness-month-3-high-impact-moves-for-patients-clinicians/

09/19/2025

Your commitment and devotion over the years have not gone unnoticed. This month, we celebrate you! Happy Birthday dear Stacy, I don't know what we do without you. 💜

08/26/2025

🌟 Know a high school or college student who’s curious about AI, digital ethics, and patient rights?

✨ Shine the Light is a new Student Ambassador program from lightcollective.org; created by students, for students. It’s a space for bold voices to lead real conversations about tech and humanity.

What’s inside:
🧠 Monthly webinars w/ guest speakers
💬 Private Discord + weekly prompts
🎯 Mentorship to build your own advocacy project
🌍 Collab on a collective campaign

📅 Applications close Sept 1
👉 Apply: [use QR code or paste: https://lightcollective.typeform.com/ShineALight]

Tag someone who should be part of this. Let’s help the next generation shine.

YouthAdvocacy

08/08/2025

Later today at DEF CON, Andrea Downing will take the stage, and trust me, you don’t want to miss what she has to say.

In a world where technology is evolving faster than ethics can be reviewed, her voice is one of the few cutting through the noise with clarity, courage, and lived experience. With the introduction of models like , the stakes around our data, consent, and digital agency have never been higher.

At The Light Collective, we’ve been sounding the alarm, and building the bridge for a future where patient communities aren’t just protected, but empowered.

If you’re at , come find us. If you’re watching from afar, pay attention. The conversation is shifting, and we’re making sure it moves toward dignity, transparency, and collective action.

#

07/21/2025

Interested to hear more about why the 23andMe bankruptcy hearing matters? Be sure to follow The Global Biodata Trust for info and insights!

06/22/2025

My last post on LinkedIn has garnered a lot of attention —38 reposts, 250+ reactions, and one very clear message:

Patient advocates are still being asked to work for free, even in rooms where everyone else is paid.

We show up with lived experience, systems insight, and hard-earned expertise—and too often, we’re the only ones expected to donate our time. This isn’t collaboration. It’s a pattern. One that wouldn’t fly in any other field.

💡 Would you ask a consultant to join your strategy session without pay?
Would you invite a UX designer to build your framework “for exposure”?
That’s exactly what’s happening in healthcare advocacy spaces—daily.

In this piece, I speak directly to the imbalance—and offer tools like the [Fair Market Value Calculator to help shift the model from extraction to equity.

📖 If you’ve experienced this dynamic—or contributed to it—it’s time we talk about it.

📰 Read the full article here: https://open.substack.com/pub/christinevonraesfeld/p/expertise-without-a-paycheck
Then share your thoughts. Let’s change the conversation—and the culture.



Have you been asked to work for free?

06/19/2025

Can't believe I'm turning 50! We're starting off the celebration this weekend and continuing with a week of random events. If you're in the Bay Area and would like to join us, send me a message for details.