Most platforms in rare disease were built for researchers, pharma, or clinicians. Patient advocacy groups show up as a secondary audience, an afterthought tab, or a logo wall. KISHO was built with patient advocacy groups as a primary user from the start, and the first set of features designed for them is now live.

This post walks through what we shipped, why we made the choices we did, and where we're taking it next.

Claim your disease page

Every rare disease on KISHO has a page. Over 10,800 of them, each pulling structured data from ClinicalTrials.gov, PubMed, FDA, NIH RePORTER, and other primary sources. When a patient advocacy group claims their disease page, they unlock everything else described in this post.

Verification is straightforward. You can verify by email from your organization's domain, by adding a meta tag to your website, or by uploading official documentation like a 501(c)(3) letter. Once verified, you control your public profile: org name, logo, description, contact info, social links, and website.

Unclaimed pages still show KISHO's aggregated data. The difference is that a claimed page has an organization standing behind it, and that matters for families arriving from search who need to know someone is paying attention to their disease.

Say Hi

This one came from a simple observation. A newly diagnosed patient or caregiver finds a disease page on KISHO. They see a patient advocacy group listed. They want to reach out but don't know how, or they're not ready for a phone call or a full intake form.

Say Hi is a low-friction introduction. The user creates a KISHO account, taps the button, and we send an introduction to the organization's designated contact. The conversation continues off-platform, between the user and the advocacy group directly. KISHO is the connection point, not the communication channel.

Every introduction is tracked in the organization's dashboard. Over time, this becomes a concrete measure of community reach that patient advocacy groups can report to their boards and include in grant applications.

Donate button

When someone discovers a disease page on KISHO, they're often at the moment where they most want to help. A parent just got a diagnosis. A researcher is looking into a new condition. A friend wants to do something.

The donate button links directly to the organization's existing donation page. KISHO doesn't process payments or take a cut. We route the click. Every click is tracked and reported in the dashboard, so organizations can see how much referral traffic KISHO is driving to their fundraising.

Post news and announcements

Patient advocacy groups have news their community needs to see: conference announcements, research updates, enrollment calls, awareness campaigns, fundraising events. Getting that news in front of people beyond the existing mailing list is a constant challenge.

Claimed organizations can publish posts that appear on their disease page and in the Change Feed. Posts can target multiple diseases (useful for organizations that work across related conditions). Each post goes through content review before it goes live, and we track views and clicks so organizations can see what's reaching their audience.

This also solves a problem for KISHO. Disease-specific news from the organizations closest to the community is better than anything we could scrape or generate. Advocacy group content makes every disease page more useful for the people who find it.

Patient registry promotion

Recruitment is one of the hardest problems in rare disease research, and patient advocacy groups are almost always the ones doing the work. KISHO now gives claimed organizations a structured place to list their patient registries directly on their disease page, with a description, eligibility details, and an enrollment link.

When someone lands on a disease page and sees an active registry with a clear path to enroll, that's one less barrier between a patient and the research that needs them. Every enrollment click is tracked in the dashboard.

What's coming next

The features above are the foundation. Here's what we're building toward.

Event and conference listings. Patient advocacy groups run galas, awareness walks, webinars, and giving days. These should be discoverable on the disease page, not buried in a Facebook event.

Org-level trial monitoring. Individual users can already set up clinical trial watchlists on KISHO. The next step is giving organizations monitoring at the org level, so the whole team sees when a trial opens, changes status, or posts results for their disease.

Org-level policy alerts. KISHO already tracks rare disease legislation across 51 jurisdictions. Patient advocacy groups should get notified when something moves that affects their community, without needing someone on staff who monitors Congress.gov.

Content feed for newsletter integration. Most patient advocacy groups send a regular newsletter and spend real time assembling updates from scattered sources. We're building a content feed that organizations can pull KISHO data from (trials, publications, grants, policy, news) and drop into their existing newsletter tools. The goal is to reduce the manual assembly work, not to replace the newsletter.

Why patient advocacy groups first

KISHO covers 10,800+ rare diseases. The data infrastructure, the clinical trial pipelines, the publication tracking, the policy monitoring: that all works regardless of whether any organization has claimed their page. But data without community is just a reference database.

Patient advocacy groups are the organizations that translate research into hope, that connect families to trials, that show up at FDA advisory committees, that fund the grants nobody else will fund. Building for patient advocacy groups first isn't charity. It's the architecturally correct decision, because the value of a disease intelligence platform is directly proportional to the trust the community places in it.

If you run a patient advocacy group and want to claim your disease page, go to [kishomed.io] and search for your condition. The claim process takes about five minutes.