Rare disease patient engagement consultant Patient advocate Public speaker Published autho

CONSULTANT ★ SPEAKER ★ ADVOCATE

Taylor is a solution-driven patient engagement & advocacy consultant with over twelve years of experience in championing the needs of the rare disease community and serving as an intermediary between patients, researchers, and industry. Shaped by both professional and lived experience as a woman with a rare, genetic disease, she is uniquely situated to develop patient-centric strategies and initiatives for both internal and external advocacy relations, and maintains strong relationships with a vast global network of patient leaders and industry professionals. Taylor works with both for-profit and nonprofit organizations, with a focus on helping drug developers, genomics companies, reproductive health organizations, and IVF clinics offering preimplantation genetic testing (PGT-M) connect most effectively with the patient communities they seek to serve.

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Consulting Services

Patient Engagement Strategy

Develop patient-centered communication frameworks and education pathways.
Design empathetic patient journey maps highlighting key decision points and emotional touchpoints.
Advise on creating inclusive environments for families facing genetic risks.
Build patient advisory boards or ambassador programs to strengthen trust and authenticity.

Ethical Patient Recruitment & Advocacy Partnerships

Guide companies in recruiting and retaining patient participants for research or engagement programs.
Facilitate collaborations between fertility clinics and rare disease or genetic carrier advocacy organizations.
Train staff in best practices for communication with high-risk patients.
Consult on ethical frameworks for genetic testing and research outreach and marketing.

Patient Insight & Experience Research

Design and facilitate patient listening initiatives, including interviews, surveys, and virtual focus groups.
Capture and synthesize insights from rare disease communities, genetic carriers, and IVF with PGT-M patients.
Translate qualitative patient feedback into actionable recommendations for clinical operations and communications.
Support organizations in integrating patient insights into product development, service design, and long-term strategy.

Strategic Advisory & Workshops

Design and deliver half-day or full-day workshops for cross-functional teams.
Train organizations on building patient trust through storytelling and transparency.
Advise on the development of patient education resources that promote clarity, confidence, and informed decision-making.
Offer ongoing advisory support, including patient engagement leadership.

Content Creation & Communications

Craft clear, compassionate patient education materials.
Develop storytelling campaigns that amplify real patient voices with dignity and authenticity.
Review and refine messaging for tone, accuracy, and sensitivity.
Provide social media strategy and content plans tailored to rare disease, genetic testing, or IVF with PGT-M audience.

Public Speaking & Thought Leadership

Keynote presentations and panels on topics such as:
- “The Patient Perspective in Reproductive Genetics”
- “Bridging the Gap Between Advocacy and Industry”
- “Empowering Carriers: Reframing Genetic Risk”
Hosting and moderating webinars for clinics or advocacy organizations.
Media interviews, podcasts, and event appearances to humanize complex topics in genetics and IVF with PGT-M.

Client Focus

IVF clinics and fertility practices integrating preimplantation genetic testing (PGT-M)
Reproductive genetics and genomics companies advancing patient-centered care
Biotech and pharmaceutical organizations developing therapies for rare and genetic diseases
Patient advocacy organizations and nonprofit institutions