Frequently Asked Questions

Kisho (希少, Japanese for "rare") is a rare disease intelligence platform. We connect clinical data, real-time news, policy tracking, and patient resources across 15,964 rare diseases — all grounded in open science.

The platform includes four connected layers:

• Disease Intelligence — Patient-ready reports with gene associations, phenotypes, prevalence, FDA treatments, and clinical trial data
• News & Pipeline Monitoring — AI-curated news from 25+ authoritative sources, classified by category and significance
• Policy Tracking — 50-state legislative monitoring with AI classification across 9 NORD policy categories
• Patient & Community Resources — PAG directory, patient assistance programs, community stories, and support tools

Kisho synthesizes data from multiple authoritative sources into a unified intelligence layer:

• MONDO Ontology — Disease classification backbone (23,529+ diseases)
• HPO — Clinical phenotypes with frequency data
• Orphanet — Prevalence estimates and epidemiological data
• ClinicalTrials.gov — Active and total trial counts per disease
• FDA — Orphan drug designations and approved treatments
• NIH / PubMed — Research publications and citation enrichment
• HGNC — Gene symbol validation (44,748 approved symbols)
• Monarch Initiative, MyGene.info, OpenTargets — Gene-disease associations
• 25+ news sources — FDA alerts, BioSpace, STAT News, Fierce Pharma, SEC filings, and more
• Congress.gov & LegiScan — Federal and state legislative data

Yes. All core platform features are free — disease reports, news feed, policy tracker, daily briefings, newsletter, patient assistance directory, PAG directory, and community contributions. No paywalls on content.

Developers can also access our API free — 1,000 requests/month, no credit card required. For higher volume, see our pricing plans.

Every disease report displays one of five validation levels:

• AI Draft (Gray) - Generated by AI from medical databases. Not yet reviewed by humans. May contain inaccuracies.
• Community Reviewed (Blue) - Reviewed by a verified community member. Basic accuracy check completed.
• Expert Validated (Green) - Validated by an accredited expert steward who has claimed responsibility for this report. Meets clinical standards.
• Community Edited (Teal) - Community contribution has been approved. Awaiting expert re-validation.
• Needs Review (Amber) - Content has changed significantly. Expert re-validation required.

Expert Stewards are verified medical professionals who "own" specific disease reports. They:

• Have verified credentials (MD, PhD, genetic counselor, etc.)
• Specialize in the disease or related conditions
• Review all proposed changes before publication
• Maintain content accuracy as research evolves
• Stand behind the quality of their validations

Their names and credentials are publicly displayed on each report they steward.

Yes. Every disease report has a complete version history showing:

• Every change made (with full text comparison)
• Who made each change (with credentials if professional)
• When changes were made
• Why changes were made (contributor notes)
• What sources were cited

Click "View History" on any disease page to see the full audit trail.

AI is used to draft content, never to validate it.

Our AI:

• Synthesizes information from medical databases
• Generates patient-friendly explanations
• Preserves uncertainty language ("may," "research suggests")
• Scores contributions for moderation priority

Our AI does NOT:

• Validate medical accuracy (humans do this)
• Invent information not in sources
• Override expert decisions
• Remove uncertainty to sound more confident

A report shows "Needs Review" when:

• Significant content changes were made
• An admin reverted to a previous version
• Source data (MONDO, gene associations) was updated
• The expert steward released their claim

This status ensures transparency, so you know when content needs fresh expert review, rather than assuming everything is always current.

Translations inherit the validation status of the source content:

• Expert-Validated English report → Expert-Validated Spanish translation
• When the English source changes, the Spanish translation is flagged "Needs Review"
• The original language (English) is always authoritative
• Each translation shows when it was last synced with the source

We use professional translation (DeepL API) and all translations display a disclaimer about source authority.

You can use the search bar on our homepage or the Disease Directory to find diseases by name, synonym, or associated gene. Our search supports typo tolerance and suggests results as you type. You can also filter by inheritance pattern, age of onset, prevalence, and clinical trial activity.

Each disease page includes a comprehensive set of data, organized across five tabs:

• Patient-friendly report sections (overview, symptoms, causes, diagnosis, treatment, prognosis, research)
• Gene associations from multiple validated sources
• Clinical phenotypes (HPO) with frequency data
• Prevalence estimates from Orphanet
• Inheritance patterns and age of onset
• FDA-approved treatments and orphan drug designations
• Clinical trial counts with direct ClinicalTrials.gov links
• Newborn screening status (RUSP) where applicable
• Patient assistance programs linked to the disease
• Related Patient Advocacy Groups
• News articles automatically linked via AI disease tagging
• PubMed citations supporting key claims
• External resources (OMIM, Orphanet, GARD, etc.)

Disease pages are organized into five tabs to help you find what you need:

• Overview — Disease summary, information gap context for less-documented diseases
• Clinical — Symptoms, causes, gene associations, HPO clinical phenotypes
• Treatment — Treatment options, FDA-approved drugs, orphan drug designations, patient assistance programs
• Resources — Patient advocacy groups, external links, related diseases, questions for your care team
• Research — Research developments, clinical trials, newborn screening status

Yes. Each disease page includes a news section showing articles that have been automatically linked to that disease by our AI tagging system. Articles are matched against 15,964+ disease names and synonyms with confidence scoring. You can also browse the full news feed at the News Intelligence page and filter by disease.

We are actively working to add patient-friendly summaries to all 15,964+ diseases. This content is generated by AI and reviewed by our community. You can help by contributing to disease pages that need content.

Yes, each disease page has a PDF export option that allows you to download a comprehensive summary of the disease information. You need a free account to download.

Kisho provides AI-curated rare disease news aggregated from 25+ authoritative sources — including FDA, NIH, BioSpace, STAT News, Fierce Pharma, PubMed, SEC filings, and more. Every article is automatically classified by category, scored for significance, and linked to the diseases it affects.

Browse the latest at News Intelligence.

Every article is classified into one of five executive categories:

• Pipeline & Approvals — FDA decisions, clinical trial results, drug designations
• Policy & Access — Legislation, reimbursement, patient access changes
• Funding & Deals — M&A, investments, partnerships in rare disease
• Science & Discovery — Research breakthroughs, gene discoveries, mechanisms
• Community & Advocacy — PAG initiatives, patient stories, awareness campaigns

Each article receives an importance score from 0 to 100, grouped into four tiers:

• Breaking (90-100) — Major FDA approvals, landmark rulings
• High (70-89) — Significant developments with broad impact
• Standard (40-69) — Routine updates and industry news
• Low (1-39) — Background context and minor updates

Importance labels decay over time — a "Breaking" article becomes "Top Story" after 24 hours and loses its label after 7 days. This prevents stale urgency.

Daily Briefings are AI-generated summaries organized by news category, published each day. Each briefing includes key takeaways and links to the underlying articles — giving you a quick overview of what happened in rare disease news that day.

Browse briefings at Daily Briefings.

Our AI-powered disease tagger matches article content against 15,964+ disease names and synonyms using fuzzy search. Each match receives a confidence score (HIGH, MEDIUM, or LOW). This is how disease pages automatically show relevant news, and how you can filter the news feed by specific diseases.

Kisho monitors rare disease legislation across all 50 states, DC, and the federal level. Bills are fetched daily from LegiScan and OpenStates, then classified by AI into NORD policy categories and scored for rare disease relevance.

Explore the tracker at Policy Intelligence.

Bills are classified into 9 NORD-aligned policy categories:

• Medicaid Financial Protections
• Medicaid Continuous Eligibility
• Newborn Screening — Core Conditions
• Newborn Screening — Secondary Conditions
• Step Therapy Protections
• Rx Cost Protections
• State Insurance Reforms
• Telehealth Access
• Rare Disease Advisory Committees (RDAC)

Policy data is refreshed daily via an automated pipeline. Bills are tracked from introduction through committee, floor votes, and enactment — so you can follow legislation as it progresses.

Yes. Our newsletter includes policy coverage across the "Policy & Access" category. You can also set up policy alert subscriptions from your dashboard to track specific states or categories.

Yes — two options:

• Weekly Digest — Delivered Mondays, a curated summary of the week's most important rare disease news
• Daily Briefing — Delivered weekday mornings, covering pipeline approvals, policy changes, funding, and research

Both are free forever. Subscribe from the News page or the homepage.

Yes. After subscribing, you can manage your category preferences — choose which of the 5 news categories you want to receive (Pipeline, Policy, Funding, Science, Community) and your preferred frequency (weekly or daily). A preferences link is included in every email.

Every email includes a one-click unsubscribe link. You can also adjust your preferences (change categories or frequency) without fully unsubscribing.

Patient assistance programs help patients afford treatments through copay assistance, free drug programs, and grants for medical expenses. These programs are offered by foundations, pharmaceutical companies, and nonprofits.

Kisho aggregates programs from four major sources:

• NORD (National Organization for Rare Disorders)
• PAN Foundation
• Good Days
• HealthWell Foundation

This covers 328+ programs with 621+ disease links. Program statuses are synced daily to stay current.

Visit the Patient Assistance Directory to search by disease name, or check the Treatment tab on any disease page — linked programs are shown automatically.

Registered users can suggest edits to disease pages. Simply navigate to a disease page, click the "Edit" button, and submit your contribution with sources. All contributions go through our review process before being published.

Contributions go through a multi-stage review process:

1. AI Review - Scores accuracy, clarity, appropriateness, and source quality
2. Expert Steward Review - The disease page steward (if claimed) reviews your contribution
3. Admin Review - Flagged items are reviewed by our moderation team

When approved, the report's validation status may change to "Community Edited" until the expert steward re-validates it as "Expert Validated."

Good contributions:

• Are accurate and based on reliable sources
• Use clear, patient-friendly language
• Include citations to medical literature or authoritative sources
• Focus on factual information without promotional content

Yes, each disease page has a version history that shows all approved changes, who made them, and when. You can compare different versions and see how the content has evolved.

A Patient Advocacy Group (PAG) is an organization that supports patients and families affected by a specific disease or group of diseases. PAGs provide resources, support networks, and advocacy for their communities.

You can browse our PAG Directory or search for PAGs by disease name or country. Each disease page also shows related PAGs if any are registered.

To register your Patient Advocacy Group:

1. Create an account on Kisho
2. Go to the PAG Registration page
3. Complete the registration form with your organization details
4. Submit for verification

Our team will review your application and contact you if additional information is needed.

Upon verification, each PAG receives a unique RDCP (Rare Disease Community Portal) identifier in the format RDCP:PAG0000001. This persistent identifier helps ensure your organization can be consistently referenced across platforms.

Verification typically takes 5-10 business days. We review each application to ensure the organization is a legitimate patient advocacy group. You can track your application status on your dashboard.

Yes! Our REST API provides programmatic access to the full Kisho intelligence platform — disease reports, news articles, policy bills, patient assistance programs, and more. Visit our API product page for pricing and documentation.

The API provides 18+ endpoints covering:

• Disease reports with all sections, genes, phenotypes, and computed fields
• Disease search with advanced filters (inheritance, onset, prevalence, trials)
• Bulk disease fetching (up to 50 per request)
• News articles with AI classification, significance scores, and disease tagging
• Policy bills with category classification and state filtering
• Patient assistance programs linked to diseases
• FDA orphan drug designations and approved treatments
• HPO clinical phenotypes with frequency data
• Newborn screening (RUSP) status
• Disease categories and classification taxonomy

See the full API documentation and interactive playground.

We offer three tiers:

• Free - $0/month (1,000 requests/month, no credit card required)
• API Self-Serve - $500/month (50,000 requests/month)
• Enterprise - Custom pricing for high-volume or custom needs

Start free and upgrade when you're ready, or talk to our team about enterprise plans.

Yes, we offer a White-Label Platform for enterprises that want to embed our content under their own brand. This includes custom styling, domain integration, and full API access.

Talk to our team to discuss white-label options.

Yes! Our Content Studio provides done-for-you content projects. We generate, fact-check, and deliver disease content tailored to your specifications. This includes content for specific disease areas, custom formatting, and expert review.

Projects typically range from $2,000 to $10,000 depending on scope.

Click the "Sign Up" button in the top navigation bar and follow the registration process. You'll need to provide your email address and create a password.

On the sign-in page, click "Forgot password?" and enter your email address. We will send you instructions to reset your password.

If you find incorrect information on a disease page, you can either submit a correction through the contribution system (if you have an account) or contact us at support@kishomed.io.

For general inquiries and support, please visit our Contact page or email us at support@kishomed.io.