Christine Von Raesfeld, Patient Advocate

12/08/2025

Many of you know I serve on the board for The Light Collective, but not everyone knows what we do. TLC was created after the BRCA breast cancer community discovered that Facebook was allowing outside parties to access and scrape data from what they believed were private support groups.

That moment showed how unsafe commercial platforms can be for patient communities.

Our mission: to protect the rights, interests, and voices of patient communities in health technology. And even today, patients are still being tracked, profiled, and exposed to data practices they never agreed to.

This is why safer, more equitable online spaces are still urgently needed.

🔒 A Safer Alternative: Our Healthy Community (OHC)

I am involved with OHC, a platform built specifically around privacy and equity.

✨ No data selling
✨ No tracking
✨ No algorithms burying posts
✨ Communities have real control over their spaces

OHC was designed for trusted health conversations, not advertising.

💜 Lupus Legacy Network

The Lupus Legacy Network is the first disease specific space on OHC and the first of many that will be created.

You can explore the platform at ourhealthycommunity.com.
If you want to join the Lupus Legacy Network, DM me for the private invite link.

If you run a group and want to bring your community into a safer, more equitable environment, reach out anytime.

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.

12/04/2025

Growing up as a child with a rare disease, I never believed a life filled with possibility was meant for me. The world felt small back then. My days revolved around symptoms, doctors, and uncertainty. Hope was something I watched other people carry, not something I ever expected to hold in my own hands.

I never imagined I would travel the world, let alone do it alone. And yet, I did.
A solo trip to the Middle East. Italy. Places I once only saw in books. Each moment of those journeys became proof that disability does not close the world. Sometimes it opens the world in ways you could never predict. Traveling alone was more than exploration. It was defiance against every childhood fear that once told me I could not.

Even now, I have moments where I feel like a burden, mostly to myself and not to those around me. Living with a disability means constantly negotiating with your own limits, expectations, and self-doubt. It has also given me resilience, creativity, and a kind of strength that only comes from learning how to keep moving forward.

A few years ago, I was honored as one of the Most Influential Women in Silicon Valley. Standing on that stage felt surreal. I was not there because I pushed past my disability. I was there because I embraced what it means to live with one. I spoke on behalf of people with chronic conditions and disabilities to remind them of something that took me years to believe myself:
You matter. Your story matters. And your voice can shape the world.

So today, on International Day of Persons with Disabilities, I want to share this:

Disability is not the end of a dream.
It is not a closed door.
Sometimes it is the beginning of an entirely unexpected journey.

If I could speak to my younger self, I would tell her:
You will see the world.
You will make an impact.
You will find your voice.
And you will use it to help others find theirs.

To everyone living with a disability:
Your path may look different, but it is not lesser.
Your life is still full of potential, purpose, and beauty.
And the world is far more open than you have been led to believe.

11/22/2025

In a recent conversation with Adam Kaufman of OSP , I spoke on Data with Dignity: Designing Fair, Human-Centered AI, a topic that’s becoming increasingly important.

We covered how AI and data practices affect real patients and families, why consent and privacy aren’t as simple as people think, and what it takes to build systems that respect the humans behind the data. These are issues many don’t realize they’re impacted by.

I encourage you to watch the conversation and consider the role your own data plays in your healthcare journey. And if you're interested in joining our mission at The Light Collective, reach out! 💜

Join patient advocate Christine Von Raesfeld and healthcare technology ex...

11/18/2025

Many of you know that I’ve been a national participant and ambassador with the NIH All of Us Research Program for years. I’ve served on committees focused on Access, Privacy & Security, as well as the Rare Disease Subcommittee. I joined because I believe in the potential of inclusive research to drive real change for people like me living with chronic and rare conditions.

But this week, a federal watchdog report revealed serious security vulnerabilities in the All of Us data platform. For the millions of participants who trusted the program with our most sensitive health and genomic information, this isn’t just a technical issues, it's personal.

When patients share their data, we’re not just filling out a survey. We’re offering pieces of ourselves in hopes of accelerating research, discovery, and cures. In return, we expect [and deserve] strong protections and responsible stewardship.

The findings in this report show that more must be done. And that needs to happen urgently.

I still believe deeply in the mission of All of Us. I still believe that diverse, representative data can save lives. But trust is the foundation of that mission, and trust needs to be safeguarded with the same seriousness as the science.

I’m sharing the article below because people deserve to know what’s happening, and because transparency is the first step toward accountability and improvement. Patients shouldn’t have to choose between contributing to progress and protecting their privacy.

We can [and must] have both.

The “All of Us” database contains the personal health data of more than 1 million people, including electronic health records and genomic data.

11/15/2025

🌟 Sharing an Opportunity for My Autoimmune Community 🌟

Many of you know how important it is that our real lived experiences shape future care, treatments, and patient support. Companies often run focus groups like this because they need to hear directly from us - what actually helps, what doesn’t, and what life with these conditions truly looks like beyond the clinic notes.

Canary Advisors is hosting paid, 60-minute Zoom focus groups (Nov 1–Dec 12) for people living with lupus, myositis, scleroderma, or vasculitis. These small groups help ensure patient voices meaningfully guide research and decision-making.

Eligibility:
✔️ Live with one of these conditions
✔️ U.S. resident
✔️ Reliable internet/phone
✔️ Comfortable sharing your experiences

💸 Compensation is provided for your time and insights.

If this feels right for you, you can reach out to learn more: katelyn@canaryadvisorsllc.com

Your voice matters—opportunities like this help make sure it’s heard. 💙

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. 💜