For patient organisations
Your community's knowledge exists. The infrastructure to organise it doesn't.
Patient organisations build community, advocacy, and disease awareness. Your members — between them — hold an enormous body of practical knowledge about living with your disease. You hear it at conferences, in forums, in the private messages members send each other. You have no mechanism to capture it, structure it, or make it useful to the next person who needs it. Wimly is that infrastructure.
You know the knowledge exists. Across your membership, patients have independently discovered the same adaptations, navigated the same bureaucratic obstacles, developed the same coping strategies, and arrived at the same hard-won insights — and none of it aggregates. Each new member solves the same problems alone, from scratch, with no access to what every member before them already learned.
It is not a community-building failure. It is a structural absence. No tool has been built to capture what your members know in a form that is searchable, structured, and findable by the people who need it. Forum threads are organised by recency and disappear below the fold within a week. Support group conversations are unrecorded. Newsletters broadcast but don't accumulate. The community's collective intelligence remains largely anecdotal.
Your organisation cannot solve this alone — it would require infrastructure, continuous data architecture, and clinical and research integration that no patient organisation is resourced to build. Wimly is built to be that infrastructure, and designed from the outset to be operated in partnership with the organisations that know the communities it serves.
What Wimly provides
What changes for your community
A structured knowledge library for your disease
Every observation, adaptation, and navigational discovery your members document accumulates — with consent — into a searchable, domain-tagged community knowledge resource. Not a forum. A structured library where the practical insight that saved one member months of trial and error is findable by every future member who faces the same situation.
Aggregated community intelligence
De-identified, population-level insight from your membership's documented experience — which functional domains are most affected at which disease stages, which challenges are most prevalent, which adaptations are most widely reported as effective. The kind of intelligence that informs your advocacy, your programming, and your conversations with clinical and research partners.
Clinical and research infrastructure your members can use
The Continuous Care Layer connects your members to their clinical teams between appointments. The research gateway, when active, lets members contribute their observations to the evidence base that will determine what rare disease treatment looks like in the next decade. Your organisation endorses a platform that is directly and immediately useful to your members — not a registry they contribute to without seeing anything in return.
A position in the platform's governance
Co-Steward organisations hold a permanent seat on the data ethics advisory board that oversees the platform's data governance, consent architecture, and community standards. The organisations closest to the communities Wimly serves have a structural role in how it develops — not as a courtesy, but as a governance requirement.
The Co-Steward offer
A partnership for organisations that want to shape this
Co-Steward organisations receive formal infrastructure partnership status with Wimly — including governance rights, community configuration, and priority data access. In return, they commit to active promotion within their membership and an institutional license purchase.
What Co-Stewards receive
- Permanent seat on the data ethics advisory board
- Co-branded Wimly version configured for your disease community
- Priority access to aggregated de-identified member insights
- CCL embedding rights within your clinical network partnerships
- Recognition as a founding infrastructure partner
What Co-Stewards commit to
- Member newsletter feature and social posts (community activation)
- Institutional license: $5,000–$20,000 as a public endorsement signal
- Active participation in the data ethics advisory board
The institutional license is the entry point to the Co-Steward relationship — governance rights, co-branded community configuration, priority data access, and permanent recognition as an infrastructure partner.
Self-assessment
A short self-assessment to identify where your organisation fits in the Co-Steward and partnership structure.
Questions about the partnership
What does the Co-Steward relationship involve?
Co-Steward organisations receive a formal designation, a permanent seat on the platform's data ethics advisory board, a co-branded Wimly version configured for their disease community, priority access to aggregated de-identified member insights, and CCL embedding rights within their clinical network partnerships. In return, Co-Stewards commit to member newsletter features, social posts, and an institutional pre-purchase ($5,000–$20,000) as a public endorsement signal. 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. Co-Steward organisations receive a co-branded Wimly version configured for their specific disease — 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 — knowledge library, peer intelligence, community identity — is specific to each. Configuration is built in partnership with the Co-Steward organisation.
How does data governance work for our community's members?
All data is patient-controlled. Members consent individually to what is shared, with whom, and for what purpose — and can modify or withdraw consent at any time through the governance transparency portal. Co-Steward organisations receive access to aggregated, de-identified community insights — population-level patterns, not individual member data — under the terms of the Data Trust Covenant. As a Co-Steward, your organisation holds a permanent seat on the data ethics advisory board that oversees those terms.
Co-Steward programme
If your organisation wants to be involved in shaping this, the time to do that is now.
Co-Steward partnerships are established during the founding period. Get in touch to discuss whether the partnership makes sense for your organisation and community.