Grassroots Advocacy as a Tool to Minimize Cancer Inequality
Patient advocate Cristina Paez shares how her global campaign directory addresses critical data gaps in the European Cancer Inequalities Registry and ensures no survivor remains invisible
My name is Cristina and I am a patient advocate. Last year I try to do something embarrassingly basic. I tried to find a list of breast cancer campaigns to find inspiration and ideas. I wanted to find other inspiration, ideas, and connect to other communities. I was looking for campaigns about creating awareness, about informing patients, about advocacy, about breast cancer.
I have spent seven years in this field. Six as CEO of a national breast cancer organisation, two on the board of Europa Donna. I know people running these campaigns personally – in Turkey, Spain, USA. And I still couldn’t find them online. What I got instead was a lot of promo material about pink washing and about pink ribbon.
So I decided to build a spreadsheet in my spare time. A few months later, it has become a website – Breastcancer Campaigns, a free directory for breast cancer patients, with over 50 campaigns worldwide and counting, sorted by region and country, with tags, open to anyone!
I’ll come back to why that matters. First, the part why this website can help the European Commission.
In February this year, the European Commission published its latest update to Europe’s Beating Cancer Plan. In the list of new mechanisms is something called the European Cancer Inequalities Registry, built explicitly to identify “trends, disparities and inequalities between and within Member States and regions.”
Five years into a flagship EU cancer strategy, the Commission has just started building the infrastructure to find out where the gaps are. That’s important because inequality that is not measured is inequality you can’t be held accountable for in anyway. But it’s also an admission. If you need a registry in 2026 to tell you where the disparities are, you’ve spent five years without one.
This gap is in the same category as I found in my spreadsheet, one level down, and it repeats again one level further down than that. The Lancet Breast Cancer Commission, in 2024, found that most national cancer registries across Europe are not able to track metastatic relapse. An entire population of patients, living with incurable disease, needing continuity of care, support, and political representation, is functionally invisible to the systems meant to serve them.
Everybody confirms that they matter. We are not able to build the right counting mechanism.
Counting is more than a bureaucratic afterthought. What isn’t counted doesn’t get exposure, doesn’t create awareness and doesn’t get funded. What isn’t found doesn’t get funders, doesn’t get press, doesn’t get invited to the table when policy gets written. And what can’t be found by other campaigns doesn’t get learned from – a small organisation in one country ends up rebuilding, from scratch, a screening-outreach strategy or a fundraising approach that already works two countries over, simply because there was never a way to find out it existed. A regional campaign that can’t be found by a funder in Brussels can lose a grant, and more it loses the ability to be compared, cited, or built on: the basic mechanics of how smaller organisations grow into something with more and bigger impact for their community.
On the other hand every October, we paper over this gap with volume. Awareness content multiplies. Brands go pink. Somewhere in that flood is a genuine surge of useful information, and it is disproportionately about the campaigns that were already easiest to find or new campaigns. The ones outside that circle don’t get louder in October. They get relatively quieter, buried under the noise. Here’s where I’d try to be constructive. The actual opportunity is that the raw material for closing this gap already exists, scattered and unlinked, but real. Regional and national campaigns exist. Patient advocates like me know where a lot of them are. What’s been missing isn’t data-collection capacity at the grassroots level; it’s a channel connecting grassroots visibility to the institutional measurement now, for this item finally being built.
That’s what breastcancercampaigns.org is trying to be, on a small scale: a free tool, built by and for breast cancer patients. It’s organised by region and by what a campaign actually does – awareness, patient information, advocacy, and more – so an organisation that wants to start a screening drive, say, can search for others already running one, and reach out directly: most listings carry a link or an email, not just a name. The intention isn’t only to be found. It’s to let campaigns use each other’s work instead of starting from zero every time. We hope that this site makes a regional or national campaign findable. So that we can share all the information that already exists, start counting to start narrowing the gap.
It won’t replace the EU’s registry and it shouldn’t try to. But if the Commission is serious about identifying disparities “between and within Member States and regions,” grassroots directories like this one are exactly the kind of ground-level signal that can be used to step up.
So, three asks: If you run or know a breast cancer campaign outside Western Europe or North America, submit it. It takes five minutes and it’s free: www.breastcancercampaigns.org! And if you’re starting a campaign rather than running one already, don’t start from a blank page. Search the directory for organisations already doing what you’re trying to do, and contact them directly.
Most of what you need to learn, someone else has already built. Finally if you’re closer to the institutional side of this, to the people building that new EU registry: talk to the directories, the local advocates, the campaigns already doing the finding. We did already a part. Use it and let us help you.
Sources:
- Coles CE et al. (2024), The Lancet – The Lancet Breast Cancer Commission.
- European Commission, DG Health and Food Safety (Feb 2026), Europe’s Beating Cancer Plan: Making a Difference, factsheet.
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