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Disease Stewardship

Help Shape How Rare Diseases Are Explained,Responsibly, at Scale

Disease Stewards are clinicians, researchers, and genetic counselors who guide AI-generated disease information, ensuring it remains accurate, compassionate, and trustworthy for patients and families worldwide.

Why Stewardship Matters

Rare disease information online is fragmented, outdated, or buried in clinical jargon. Human-written reports don't scale to 7,000+ rare conditions, and AI alone shouldn't operate without expert oversight.

Patients deserve clarity. Experts deserve guardrails. Stewardship bridges the gap.

Kisho combines AI-generated first drafts with rigorous expert validation. But the AI can't do this alone. We need subject-matter experts who can guide, validate, and improve content so every rare disease has accurate, accessible information.

15,964+ diseases

in our database. Less than 1% have expert stewardship.

Definition

What Is a Disease Steward?

A Disease Steward is a subject-matter expert who guides and validates how a specific disease is explained to the public,working with AI, not replacing it.

What Stewards Are NOT Doing

  • Writing reports from scratch
  • Performing exhaustive literature reviews
  • Providing medical advice to patients
  • Assuming legal responsibility for patient decisions
  • Replacing peer review or clinical guidelines

What Stewards ARE Doing

  • Guiding AI-generated content toward accuracy
  • Flagging outdated or misleading language
  • Ensuring responsible framing of uncertainty
  • Reviewing community contributions
  • Building a team of collaborators (optional)

Your Role in Practice

Here's what stewardship looks like day-to-day.

Review & Validate

Review AI-generated summaries for accuracy, clarity, and tone. Flag content that needs attention. Validate that key concepts are framed responsibly.

Guide Community Input

Community members can suggest edits and additions. You review these contributions and decide what gets published, maintaining quality while welcoming input.

Build Your Team (Optional)

Invite other qualified professionals to collaborate. Assign them as Editors (can edit content) or Reviewers (can review contributions). You remain the Owner.

Approve Validation Status

When you're satisfied with a report, mark it "Expert Validated." Your name and credentials appear publicly, signaling trust to patients and families.

Most stewards spend 15–30 minutes per report, on a schedule they control.

There are no deadlines. No quotas. No mandatory meetings. You steward on your terms.

AI + Expert Collaboration

How AI and Stewardship Work Together

Kisho's content pipeline is AI-assisted, but expert-governed.

1

AI generates first drafts from trusted sources (MONDO, Orphanet, OMIM, HPO)

2

Automated safety checks enforce strict clinical rules, blocking dangerous content before you ever see it

3

You provide judgment context, and oversight, catching what algorithms can't

4

Your validation marks the content as trustworthy for public consumption

We don't ask AI to replace expertise. We ask it to handle volume while you handle judgment. Human oversight where it matters most.

What You Gain

Stewardship is more than volunteer work. It's a way to shape public health education.

Professional Impact

  • Shape how thousands of patients understand a condition
  • Influence public-facing medical education at scale
  • Be credited as Disease Steward (optional public attribution)
  • Demonstrate leadership in responsible AI use in medicine
  • Build a public portfolio of validated disease reports

Ethical Alignment

  • Guard against health misinformation
  • Promote non-stigmatizing, patient-centered language
  • Ensure uncertainty is communicated honestly
  • Prevent AI hallucinations from reaching patients
  • Uphold clinical standards in accessible content

Practical Benefits

  • No grant writing or funding applications
  • No institutional overhead or committee meetings
  • No publishing delays or peer review queues
  • No obligation to cover diseases outside your expertise
  • No minimum time commitment

Unlike journal editing, guideline committees, or registry boards, stewardship is high-impact, low-friction, and entirely on your terms.

Governance

Your Protections

We've built Kisho to protect both patients and experts. Here's how:

Legal Boundaries

Stewards are not liable for patient decisions. All content includes clear "educational only, not medical advice" disclaimers. You're validating accuracy, not prescribing treatment.

Editorial Guardrails

AI safety checks catch dangerous content before it reaches you. Version history tracks every change. Admin review backs up edge cases. You're never the last line of defense alone.

Transparent Attribution

Your contributions are versioned and auditable. You can see exactly what you validated and when. If concerns arise, the record is clear.

Graceful Exit

You can release stewardship at any time. No penalty. No awkward conversations. The report returns to "unclaimed" status for another expert to adopt.

Who Should Apply

We're looking for subject-matter experts who want to make rare disease knowledge more accessible.

Clinicians with experience diagnosing or treating rare diseases

Researchers focused on specific conditions or disease areas

Genetic counselors with patient education experience

Geneticists with deep knowledge of specific disorders

Medical students with focused rare disease research (verified)

Patient advocacy leaders with deep disease knowledge

Vetting process: You'll complete a brief vetting process: 3-5 questions about your specific disease. This isn't a test of memorization. It's a conversation about your real-world expertise.

You do not need to be an AI expert. We handle the technology.

Verification required: Stewardship requires professional verification. If you're a healthcare provider, researcher, geneticist, or medical student, you'll verify your credentials once, then claim any disease within your expertise.

Four Simple Steps

Getting started is straightforward.

1

Verify Your Credentials

If you haven't already, complete professional verification. This takes 5-10 minutes and opens stewardship across the platform.

2

Find Your Disease

Browse our disease directory or search for conditions in your specialty. Look for reports marked "Unclaimed" or "AI Draft."

3

Complete Vetting Questions

Answer 3-5 disease-specific questions. Our AI evaluates your responses for depth and accuracy, not perfect recall.

4

Begin Stewarding

Once approved, you're the official steward. Edit content, review contributions, build your team, and validate the report when ready.

Most applications are reviewed within 48 hours. High-scoring responses may be approved automatically.

Frequently Asked Questions

Join the Stewardship Community

Rare disease knowledge should be accurate, compassionate, and accessible.

Every disease deserves an expert voice. Every patient deserves trustworthy information. Stewardship is how we get there, together.

Your expertise could shape how thousands of patients understand their condition. Ready to make that impact?