For patient organisations

You build community, advocacy, and disease awareness with limited resources. Isn't it time to add a source of sustained funding?

Wimly gives patient organisations a daily-use tool their members actually need, structured data that strengthens advocacy, and two revenue mechanisms that reward the work of building a community.

1. The problem

Three structural problems that make running a patient organisation harder than it should be

Patient organisations exist to serve their members and advocate for their disease community. The challenge is that the most important things members need, including practical guidance on living with the disease, tools to manage their clinical care, and connection with others at the same stage, are hard to deliver consistently with the resources most organisations have. Three structural problems compound this difficulty.

Members join, get some information, and go quiet

Most patient organisations see the same pattern. A newly diagnosed family joins, downloads the information pack, attends one event, and then largely disappears from active engagement. The organisation has nothing genuinely useful to offer them on a weekly or daily basis, so the relationship becomes passive.

A passive member is less likely to renew, donate, or bring others in. A passive membership base weakens the argument that the organisation represents an active, engaged community, which matters when making the case to health authorities and funders. And an organisation that touches its members only occasionally is not present when members are making decisions about where to direct their attention or money.

Advocacy based on anecdote is less persuasive than advocacy based on evidence

When a patient organisation meets with a health authority, a clinical guideline committee, or a research funder, the strongest position is one backed by structured data from the community. How many members experience a specific symptom at early disease stage? At what point do particular practical challenges typically emerge? What do members identify as the most disruptive aspects of living with this disease?

Most organisations cannot answer these questions with data. They have member surveys, attendance figures, and accumulated anecdotal knowledge. That is valuable, but it is not the kind of structured, continuous evidence that moves conversations with health systems and research funders.

The work of building a patient community does not pay for itself

Patient organisations rely on donations, membership fees, grants, and occasional commercial partnerships. Most of these funding streams are uncertain and time-consuming to pursue. There is rarely a direct relationship between the value an organisation creates for its community and the revenue it generates.

Organisations that can demonstrate an engaged, data-contributing membership and that hold a recognised role in a structured patient intelligence infrastructure are in a stronger position with research funders and commercial partners. But that position takes years to build without a systematic way to do it.

2. The solution

How Wimly addresses all three problems through the same mechanism

Wimly gives your members a genuinely useful daily tool and gives your organisation a defined, transparent role in the infrastructure it creates. The three problems above have different shapes, but they share a root cause: organisations have no way to deliver continuous, practical value to members. Wimly is that way.

A daily-use tool that keeps members engaged and your organisation visible

When your members use Wimly, they get something real in return on the day they use it: a structured record of what they observed, a summary ready for their next clinical appointment, access to what other community members have already figured out. This is not a one-time information resource. It is a tool they return to regularly.

Your organisation introduces Wimly to its members through a referral link, a code, or a QR code. Every member who signs up through your link is attributed to your organisation. A logo and a short note about your organisation appears in their Wimly account, a persistent marker of who brought them there. Each time a member opens Wimly, your organisation is present in a useful context.

When a member upgrades to a paid tier, your organisation earns a share of that revenue. The more your members find Wimly genuinely useful, the more your organisation benefits from having introduced them.

Structured community data that gives advocacy conversations an evidence base

Members of your community who use Wimly log what they notice about their disease every day. Each observation is structured, timestamped, and added to Wimly's dataset for the disease community. Members grant Wimly the rights to use their de-identified observations under terms they consent to individually. Co-Steward organisations do not own or control that data. What they receive is access to aggregated, de-identified insights drawn from the full disease community dataset, population-level patterns that no single organisation could generate alone.

Those patterns answer the questions health authorities and research funders actually ask. How does functional capacity change across the community over time? What do members identify as the most disruptive aspects of their disease at different stages? What proportion of members report difficulty with workplace accommodation? These questions become answerable with evidence rather than anecdote, because the structured observations your members have contributed to Wimly have been accumulating in a form designed to answer them.

Two revenue mechanisms: one for any organisation, one for Co-Steward partners

Any organisation that introduces members to Wimly through a referral link earns a share of those members' paid upgrade revenue. This is available to any patient organisation regardless of size, without a formal partnership agreement. It creates a direct, traceable connection between the work of building your community and income for your organisation.

Co-Steward organisations, those that enter a formal governance partnership with Wimly, participate in a second revenue mechanism: a defined share of the commercial revenue Wimly generates from the disease community dataset. When Wimly sells research access, analytics services, or trial cohort recruitment services using the disease community dataset, Co-Steward organisations receive a portion of that revenue under terms set out in the partnership contract.

Wimly publishes its revenue sharing parameters openly. The framework is standardised and visible before any organisation commits to anything. There is no opaque negotiation.

The Co-Steward commitment

Co-Steward organisations hold a governance seat in the disease community edition of Wimly, alongside any other Co-Steward organisations for the same disease area. The disease edition belongs to the community, not to any single organisation. Co-Stewards jointly oversee data governance, consent standards, and community architecture for their disease area.

In return for that governance role and the deeper revenue participation it brings, Co-Steward organisations commit to active promotion within their membership and an institutional license of $5,000 to $20,000 as a public signal of the partnership.

The institutional license is the entry point to the Co-Steward relationship: governance rights, recognised Co-Steward status within the disease community edition, priority access to aggregated community data, and permanent recognition as a founding infrastructure partner for your disease area.

3. The result

What changes for your organisation as the community data compounds

An organisation whose members use Wimly regularly is an organisation with a demonstrably active, engaged community. That engagement is visible, attributed, and growing over time. When you sit down with a health authority or research funder, you are not presenting a survey conducted once two years ago. You are presenting a continuously updated picture of what life with this disease actually looks like, built from the structured observations your members have contributed to Wimly.

Your referral revenue grows as your members use Wimly and upgrade over time. Your Co-Steward revenue grows as the disease community dataset becomes more valuable to researchers, clinical trial sponsors, and health system partners. The value your organisation delivers to members and the return it receives for delivering it compound together.

An organisation that holds a governance role in the infrastructure that its members' observations feed into is in a different position when approaching funders, pharmaceutical partners, and health authorities than one relying on goodwill and anecdote alone. Starting now means your organisation is established in that position when the data starts to matter most.

Questions about the partnership

What does the Co-Steward relationship involve?

Co-Steward organisations receive a formal governance seat in the disease community edition of Wimly, alongside any other Co-Steward organisations for the same disease area. They receive priority access to aggregated, de-identified community insights, and CCL embedding rights within their clinical network partnerships. In return, Co-Stewards commit to active promotion within their membership and an institutional license of $5,000 to $20,000 as a public signal of the partnership. The Co-Steward relationship is a long-term governance partnership, not a promotional arrangement.

How does Wimly relate to our existing registry or database?

Wimly is not a registry and does not compete with one. Registries collect structured clinical data at scheduled timepoints. Wimly captures continuous daily lived-experience observations between those timepoints. The two are complementary: a patient who uses Wimly and contributes to your registry generates richer, more contextualised data than one who does neither. Where your registry collects what clinicians observe about patients in clinic, Wimly captures what patients observe about themselves between clinics.

Can Wimly be configured specifically for our disease community?

Yes. The disease community edition of Wimly is configured for a specific disease area, with community-relevant content, domain tags appropriate to the condition, and the ability to surface community-specific resources to members. The platform's core architecture is shared across disease communities. The community layer is specific to each disease area. Multiple Co-Steward organisations for the same disease area share that edition jointly. Configuration is built in partnership with all active Co-Steward organisations for the disease area.

How does data governance work for our community's members?

All data is governed by the terms members consent to individually when they join Wimly. Members decide what is shared, with whom, and for what purpose, and can modify or withdraw consent at any time. Wimly holds the data rights under those individual consents. Co-Steward organisations receive access to aggregated, de-identified community insights — population-level patterns rather than individual member data — under the terms of the Data Trust Covenant. As a Co-Steward, your organisation holds a governance seat on the body that oversees those terms for your disease area.

Start a Co-Steward conversation

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Write to us directly. We will respond within two working days to discuss whether the partnership makes sense for your organisation and community.

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A short self-assessment that maps your organisation's situation to the most relevant aspects of the Wimly partnership model. Takes about two minutes.

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