Editorial standards & process
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At Probably Genetic, we're committed to delivering content that serves the rare disease community with accuracy, clarity, and compassion. Our editorial standards ensure every piece of content helps patients navigate their diagnostic journey with confidence and understanding.

Our mission

We create content that transforms the diagnostic experience for individuals with rare diseases. Every article, resource, and piece of information we publish serves one purpose: helping patients get answers faster and connect with the care they need.

Core editorial principles

Patient-first approach

Every piece of content starts with a simple question: "How does this help someone on their diagnostic journey?" We prioritize practical, actionable information that directly impacts patient outcomes.

Evidence-based content

All health information comes from peer-reviewed research, government health agencies, and accredited medical institutions. We cite specific statistics and studies to back up our claims, just like noting that patients wait 5-7 years, consult up to 8 specialists, and endure multiple misdiagnoses before receiving clarity.

Clear, accessible language

We write for patients, not medical professionals. Complex genetic concepts are explained in plain English, with technical terms defined when necessary. If a patient can't understand it, we rewrite it.

Content standards

Research and fact-checking

- All health claims require backing from reputable sources
- Statistics must be current and properly attributed
- Medical information undergoes review by qualified healthcare professionals
- Sources include peer-reviewed journals, government agencies, and established medical organizations

Voice and tone

Our content reflects the reality of the rare disease experience while maintaining hope and clarity:
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Empathetic: We acknowledge the challenges patients face
‍Direct: We get to the point quickly
‍Hopeful: We focus on solutions and paths forward
‍Conversational: We write like we're talking to a friend who needs answers

Patient stories and testimonials

Real patient experiences strengthen our content and provide relatability. When featuring patient stories:
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- Obtain proper consent for all testimonials
- Use first names and last initials when possible
- Focus on the diagnostic journey and outcomes
- Ensure stories align with our evidence-based standards

Review process

Editorial review

Every piece of content undergoes multi-stage review:
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1. Writer research and draft creation
2. Editorial review for clarity, accuracy, and alignment with standards
3. Medical expert review for health-related content
4. Final editorial approval before publication

Medical expert validation

Health-related content is reviewed by:
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- Licensed physicians with relevant specialties
- Genetic counselors for genetic testing content
- Healthcare professionals experienced in rare disease diagnosis

Source verification

We maintain rigorous source standards that prioritize primary sources over secondary reporting whenever possible. Recent publications are given priority, with content typically drawing from research published within the past five years to ensure current relevance. Government health agencies and major medical institutions serve as our most trusted authoritative sources, while anonymous sources are avoided to maintain transparency and accountability in our reporting.

Inclusivity and accessibility

Inclusive language

Our content serves all patients regardless of background, identity, or circumstances. We consistently use person-first language, referring to individuals as "people with rare diseases" rather than "rare disease patients." Our editorial team actively works to avoid stigmatizing or outdated terminology while ensuring diverse patient experiences and perspectives are represented throughout our content. We also consider accessibility needs in content formatting to ensure information reaches all members of our community effectively.

Global perspective

While based in the US, we recognize that rare diseases affect patients worldwide and our content reflects this global reality. We include international statistics when relevant and acknowledge geographic differences in healthcare access that may impact patient experiences. Our examples and case studies are chosen to be inclusive and avoid assumptions about US-specific healthcare systems, ensuring our content serves patients regardless of their location.

Accuracy and updates

Fact-checking process

All statistical claims undergo verification against original sources to ensure accuracy and reliability. Medical information is cross-checked with multiple authoritative sources before publication, and citations are formatted clearly to allow readers to verify information independently. We conduct regular reviews of published content to maintain accuracy as medical understanding evolves.

Content updates

Medical research evolves rapidly, and our content keeps pace with these changes. We review published content quarterly to identify outdated information and update statistics and research findings as new data becomes available. All articles display "last updated" dates to help readers understand the currency of information, and we maintain version control for significant content changes to track our editorial evolution.

Transparency and ethics

Clear attribution

All sources are clearly cited within articles to promote transparency and allow readers to explore topics further. Author credentials and medical reviewer qualifications are listed to establish expertise, while conflicts of interest are disclosed when relevant. Our editorial process remains transparent to readers, helping them understand how our content is created and reviewed.

Patient privacy

Patient testimonials require explicit consent before publication, and personal health information is protected according to established privacy standards. Stories are appropriately anonymized while maintaining authenticity, ensuring patient privacy without compromising the powerful impact of real experiences.

Corrections and feedback

Error correction

When errors are identified, corrections are made promptly and transparently. Significant changes are noted with update dates, and original errors are acknowledged rather than silently corrected, maintaining our commitment to transparency and accountability.

Reader feedback

We welcome input from the rare disease community through clearly provided feedback channels. Patient experiences directly inform content improvements, while medical professionals are encouraged to provide expert input. Community suggestions are incorporated when appropriate, ensuring our content continues to meet the evolving needs of those we serve.

Continuous improvement

Our editorial standards evolve alongside new research in rare disease diagnosis and treatment, feedback from patients and healthcare providers, changes in digital health communication best practices, and advances in genetic testing and precision medicine.

These standards ensure our content serves the rare disease community effectively, helping patients move from uncertainty to answers with confidence and clarity.