News - 17 Dec `25VR Foundation — 2025 Year-End Report

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VR Foundation — 2025 Year-End Report

2025 was the year vitiligo went from a niche health issue to a systems problem worth fixing. We managed World Vitiligo Day’s evolution into a genuine global platform — over 120 million accounts reached, 40+ events across 48 countries. But data always tells the harder story: patients can’t afford treatments, clinical trials don’t recruit, and funding remains rare for a common disease. So we did both the public work and the infrastructure work.

Here’s the full picture.

1) World Vitiligo Day: bigger, smarter, and more measurable

World Vitiligo Day (WVD) turned 15 on June 25, 2025 under the theme “Innovation for Every Skin, Powered by AI,” with Toronto, Canada as the annual HQ. The campaign confirmed 40+ global events and documented media presence across 48+ countries.

Running a global campaign in a city like Toronto — unionized labor, hotel rates that rival Manhattan, catering costs that make you weep — tests your commitment to ROI quickly. But the awareness return justified every dollar.

The headline number still sounds slightly unreal, but here it is: 60 million unique accounts reached on June 25 (single day), with 120–150 million total impressions across the full campaign period. That’s not vanity. That’s millions of people who saw the word “vitiligo” on their feed and clicked to watch. For a condition that most dermatologists still treat as cosmetic, that’s a shift.

2) Frontiers in Medicine Research Topic: wrapped, published, and read

Prof. Torello Lotti and I have been co-editing (since September 2024) the Frontiers in Medicine Research (Q1, Impact Factor 3) topic “Vitiligo: From Obscurity to Spotlight – Advancing Care with New Therapies and AI.

The Topic wrapped in October 2025 with 12 published articles from 59 authors across 18 countries, resulting in ~27,000 total views and downloads. That’s not a huge audience in absolute terms, but it’s a precisely targeted one: clinicians, researchers, and policymakers who needed to see where the field is moving. The collection reads like a snapshot of where vitiligo care is heading: new therapies entering the clinic, AI tools actually working, and — refreshingly — real-world patient priorities sitting at the same table as the science.

3) Publications: six in 2025, one still in peer review

In 2025, we published six papers and had one more in peer review. The portfolio is deliberately balanced by design: about half tackle the human side (quality of life, socioeconomic burdens, patient journey mapping, and vitiligo in skin of color populations), while the other half are Opinion Papers (by the journal’s definition) that are unapologetically practice-facing and clinically oriented. Those opinion pieces push for a systems-level comprehensive care model — because publishing in peer review doesn’t mean you have to sound like you’re speaking underwater.

One additional manuscript remains in peer review as of mid-December 2025. It’s unlikely to be published within the remaining days of the year, but the analysis itself is already shaping conversations with clinicians.

4) Patient reality checks: pipeline, costs, and coverage gaps

Two themes dominated this work: what’s coming (pipeline) and what it costs (access). Because knowing a therapy exists is useless if patients can’t afford it or insurance calls it cosmetic.

In late 2025 we updated our Vitiligo Drug Pipeline Analysis and Market Insights, a quarterly report that tracks the shifting late-stage landscape and an estimated market “up to $1.8B.” The scope expanded significantly this year — the report now includes companies from India and China, reflecting the reality that vitiligo R&D is no longer a Western-only affair. We’re watching emerging markets move faster than we expected, and that data matters for understanding where innovation is actually happening.

We also published “The Real Price Tag of Treating Vitiligo (2025 Edition),” a detailed breakdown of insurance coverage gaps, out-of-pocket costs, and the financial burden patients carry when the system calls their disease “cosmetic.” The data is sobering. The solutions are harder.

We should also note a rare positive signal: Incyte invited patient support leaders into their labs this year to give direct feedback on existing therapies and what they expect from future ones. That kind of bidirectional loop between patients and R&D is still uncommon in vitiligo — most companies treat patient input as optional feedback, not essential design thinking.

5) Deep-dives: the funding gap and the gatekeepers

In December, we published two deep-dives that work as a paired set: “The Vitiligo Paradox – Common Disease, Rare Funding” and “Who Gets to Do Vitiligo Science?”. Together, they map the economics of the field and who actually gets to shape what becomes “standard of care.”

 

Those two pieces weren’t written to be “inspiring.” They were written to be useful — especially for anyone trying to understand why progress can be slow even when the science is ready.

 

6) Education: Deep Dive in Vitiligo, weekly, no mystical poetry

On the education side, our Deep Dive in Vitiligo podcast exploded this year. We saw 2,600+ downloads, representing an 11,186% year-over-year increase. The format is deliberately simple: real questions, clear answers, and zero mystical detox poetry. No “healing journeys.” No influencer guests selling supplements. The show covered everything from basic science (how does the immune system actually attack melanocytes?) to nutrition and culture, plus the psychological and social load. We talk about the stuff that matters to people actually living with vitiligo — not what wellness brands want them to care about.

Beyond the podcast, we published education pieces built for real life, not just “interesting science.” One unpacked how vitiligo outcomes can quietly track with geography and access: “The Vitiligo – Postal Code Connection Revealed”. Another did the uncomfortable but necessary job of sorting what we actually know (and still don’t) about topical treatment safety, beyond the marketing layer: “Topical Treatments for Vitiligo: What We Know (and Still Don’t) About Their Safety”.

We also released a range of materials (1, 2, 3) on the microbiome and the gut–mind connection, reflecting a more modern view of vitiligo: the skin doesn’t operate in isolation. Immune signaling, stress physiology, and the gut ecosystem talk to each other, and patients often feel that connection long before textbooks catch up.

7) AI-Guide: smarter, safer, more useful

We track AI in healthcare closely, not as spectators but as builders. So we kept evolving the AI-Guide on Vitiligo — moving it beyond “just a library” and toward a proactive companion for real-world decisions.

We’re conservative by design. A 1% error rate is still a disaster when people treat answers like medical advice. That’s why we deliberately stopped our AI from playing a “psychological support” role — a space where language models can sound confident and still be misleading — because medicine isn’t a sandbox. We’d rather have users frustrated by our caution than harmed by our overconfidence.

We also made a strategic move on educational materials distribution through AI: “We’re Taking Vitiligo to YouTube — Before AI Chatbots Get It Wrong, Forever.” The logic is simple. If people are already getting their health answers from AI chatbots and AI-generated videos, we can either complain about misinformation or compete with it. We chose the second option — building clearer, high-signal education in the formats where bad info spreads fastest.

We’ve seen the upside firsthand: faster triage, better education, better tools in the hands of clinicians and patients. We’ve also seen the part nobody puts in the demo — quiet failure modes, confident wrong answers, and systems that feel helpful right up until they aren’t (1, 2, 3, 4, 5). So we stay pragmatic: we use AI where it earns trust, and we put guardrails where the risk is real.

Technical update: our collaboration with Skinopathy remains active, with results expected to mature next year. In parallel, we launched a Scanderm collaboration with a BRICS grant request, focused on building an AI-powered teledermatology platform for India and training AI models specifically on dark skin tones — because most vitiligo AI is trained on lighter skin, and that’s a problem.

8) Policy and systems: the unsexy work that moves the needle

VRF submitted its UN ECOSOC Quadrennial Report as part of our ongoing NGO responsibilities. We also tracked major global health signals like the World Health Assembly resolution declaring skin diseases a global public health priority.

We monitored what that declaration actually means for vitiligo specifically — spoiler: it’s complicated, and recognition doesn’t automatically translate to resources or any kind of action. 

9) Grassroots support: Kenya, Congo, Cuba

Throughout the year, we provided direct assistance and grants to vitiligo support groups where it was needed most:

  • Kenya: Funded educational materials for WVD campaign events, helping local organizers scale their reach without starting from zero.
  • Congo: Supported operational planning and fundraising strategy for emerging patient networks trying to keep programs alive with minimal resources.
  • Cuba: Covered essential telecom needs to keep the network connected—because infrastructure that the Global North takes for granted is a luxury elsewhere.

10) Clinical trial recruitment: a reckoning

Throughout the year, we facilitated clinical trial and research study recruitment, distributed casting calls for vitiligo models, and amplified community announcements. The work felt necessary and aligned with our mission: connecting patients to research opportunities.

But the data told a different story. Our internal measurement of the recruitment funnel revealed a sobering reality: only 2% conversion from expressed interest to actual enrollment. That means 98% of people who showed interest didn’t enroll. Some couldn’t complete the pre-screener. Some traveled and found the sites too far. Some read the fine print and realized the study wasn’t designed for their skin type. Some just fell through cracks in the system.

That number forced a hard conversation. We are redirecting our resources. We will no longer add our platform to recruitment efforts without evidence of reasonable conversion rates and study design that actually prioritizes patient experience — not just patient recruitment.

In 2026, we will address this matter directly with study sponsors — not to shame them, but to solve it together. If the pipeline is going to deliver real therapies, the recruitment funnel has to work. And right now, it doesn’t.

11) Closing notes

If there’s a theme to 2025, it’s this: vitiligo progress needs both spotlight and structure. We did the public work (WVD reach), the scientific work (Frontiers + publications), the practical work (costs + pipeline), and the infrastructure work (policy + safer AI education). And we got honest about what isn’t working.

We remain a lean structure, powered largely by in-kind, pro-bono help, ensuring that every dollar donated goes directly to current projects. If you want this work to stay independent, ad-free, and scalable, consider supporting it. Our financials are transparent and available for download on our “Financial Information” page.

World Vitiligo Day 2026 returns to Chandigarh, India — a deliberate choice to deepen the Global South’s voice in vitiligo science and advocacy. The work of 2025 built the platform. 2026 will test whether we can use it.

Yan Valle
CEO, Vitiligo Research Foundation (VRF)
 

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