How We Create Disease Information
Our goal is simple but serious: to provide clear, trustworthy, and compassionate information about rare diseases, at scale, without losing accuracy, humility, or care.
Who Our Information Is For
Patients & Caregivers
Those living with or caring for someone with a rare disease, seeking clear, reliable information.
Families
People facing a new or uncertain diagnosis, looking for understanding and next steps.
Everyone
Anyone seeking a clear, reliable overview, regardless of medical training.
We understand that many readers may be reading under emotional stress, new to medical terminology, or looking for reassurance as well as facts. This shapes not only what we say, but how we say it.
Our Editorial Principles
Seven principles guide every piece of content you see on our platform.
Patient-First, Not Overwhelming
We aim to explain, not overload. Clear, plain language whenever possible. Medical terms explained when necessary. Focus on what matters most for understanding the condition and next steps.
Accuracy With Caution
Medical knowledge evolves. We take a conservative approach to claims. You'll see phrases like "may help," "can support," or "has been shown to help some individuals." Cautious language is a safety feature.
Honesty About Uncertainty
Rare disease data is often incomplete or still emerging. When evidence is limited, mixed, or evolving, we say so clearly. Transparency builds trust.
Recognition That Experiences Vary
No two people experience a rare disease in exactly the same way. Every report emphasizes that symptoms, severity, and outcomes can differ. We avoid "always," "never," or "all individuals."
Awareness That Medicine Changes
Some conditions are understood differently today than a decade ago. When relevant, reports reflect how earlier descriptions may differ from current care and why older literature may not reflect today's reality.
Respectful, Non-Stigmatizing Language
We are careful with terminology. Outdated terms are clearly labeled as such and included only to help readers recognize older medical records. Our focus is describing conditions, not labeling individuals.
Psychosocial Impact Matters
Living with a rare disease affects more than physical health. Our reports acknowledge emotional impact, caregiver responsibilities, quality of life, and the importance of community and advocacy groups.
How Our Reports Are Created
AI allows us to scale responsibly, but it does not replace editorial standards.
Knowledge Synthesis
Our AI systems extract information from trusted medical and scientific sources, including disease ontologies, genetic databases, clinical references, and research registries.
AI-Powered Drafting
Advanced AI synthesizes this information into patient-friendly reports following a consistent structure, easy to navigate, comparable across diseases, and designed for clarity.
Rigorous Quality Control
Before publication, every report undergoes automated verification: gene accuracy, treatment language, uncertainty handling, prognosis framing, and terminology review.
Rigorous Safety Checks
Before publication, every report undergoes automated verification designed to protect accuracy and safety.
Gene & Inheritance Verification
Correct use of genes and inheritance patterns
Conservative Treatment Language
Safe, accurate treatment information
Uncertainty Handling
Appropriate framing of unknowns
Prognosis Framing
Careful handling of outcomes and expectations
Terminology Review
Respectful, non-stigmatizing language
Source Attribution
Traceable references to authoritative sources
Some reports may also be reviewed or claimed by verified medical professionals.
Learn about our Trust ArchitectureSources & Transparency
Every report links back to its original scientific and medical sources, so readers can see where information comes from, explore original materials, and verify data independently.
Transparency is a core part of trust.
MONDO
Disease classification
OMIM
Genetic data
Orphanet
Epidemiology
HPO
Clinical phenotypes
ClinicalTrials.gov
Trial data
FDA
Drug approvals
What Our Reports Are, and Are Not
Our reports are:
- Educational resources for understanding rare diseases
- Patient-friendly explanations of complex medical topics
- Designed to support informed conversations with healthcare providers
Our reports are not:
- Medical advice or diagnosis
- A substitute for professional healthcare
- A guarantee of diagnosis, treatment, or outcome
Always consult qualified healthcare professionals to discuss your individual situation and medical needs.
Feedback & Continuous Improvement
We know that no system is perfect. Every disease page includes a way to report inaccuracies or concerns directly. Feedback submitted by users is reviewed by our team and helps guide corrections, updates, and ongoing improvements.
We view patients, caregivers, and clinicians as partners in quality, not passive readers.
Our Commitment
Rare diseases affect real people and families. We take that responsibility seriously.
Thoughtful
Careful consideration in every word
Careful
Safety-first approach to claims
Transparent
Clear about sources and limitations
Improving
Growing with advancing science
Trust is earned over time. This editorial policy is how we work to earn it, every day.