Book Kelly Paul to Speak
Marketing strategist. Rare disease patient. Both sides of the patient information problem.
Kelly Paul is a marketing executive, rare disease patient advocate and host of the Fine, But Not Fine podcast. She brings more than two decades of marketing and communications experience together with more than a decade of living with mycosis fungoides, a rare form of cutaneous T-cell lymphoma.
Her presentations look at how patients find health information, navigate care and advocate for access, and at what healthcare and patient organizations can do differently as a result. Audiences leave with practical ideas, not general calls to “raise awareness.”
Speaking topics
When Patients Ask AI: What Rare Disease Organizations Need to Know About the New Patient Information Journey
Patients no longer wait for their next appointment to ask about symptoms, diagnoses, treatments or prognosis. They ask Google, ChatGPT and other AI tools to translate complex medical information into something they can understand.
For rare diseases, that creates a specific problem: AI can only work with the information that exists. When authoritative, current, patient-friendly content is scarce, AI answers may be incomplete or misleading.
Kelly covers:
- How patients are using AI to understand their health
- Why existing online content shapes the answers AI provides
- What happens when rare disease information is scarce, outdated or hard to understand
- How organizations can create content that serves both patients and AI platforms
- Where human expertise remains essential
Ideal for: rare disease conferences, patient advocacy organizations, healthcare communications teams, nonprofit leaders, and pharma and biotech patient-engagement teams.
The Cost of Being Rare: What the Healthcare System Doesn’t Measure
Rare disease carries costs that never appear on a medical bill: travel to specialists, workdays lost to treatment, specialty pharmacy calls, insurance appeals, prior authorization delays, and hours spent researching a condition few people have heard of.
Drawing on more than a decade as a rare disease patient, Kelly examines this hidden burden and what healthcare professionals, patient organizations, employers and policymakers can learn from it. Topics may include treatment access and insurance barriers, prior authorization, time and travel burdens, specialty pharmacy, communicating with providers, and effective self-advocacy.
Ideal for: rare disease conferences, healthcare organizations, patient advocacy events, employer groups and professional associations.
Listen: 150 Appointments: What Rare Disease Treatment Actually Costs
When Health and Work Collide
What happens when managing a chronic or rare disease becomes a second job? Kelly speaks candidly about balancing treatment, appointments and a leadership career, including the hard decisions about disclosure, flexibility and asking for help.
Ideal for: employer and HR groups, women’s leadership events, professional associations and employee resource groups.
Listen: Did I Really Have to Say That? Disclosing a Cancer Diagnosis at Work
Marketing, Communications and Nonprofit Strategy
Kelly has spoken to professional and nonprofit audiences throughout her career. Programs can be built around marketing strategy, content and search, AI in marketing, fundraising communications, nonprofit storytelling, and websites and digital marketing for small organizations.
Ideal for: nonprofit associations, higher education, small business programs, and civic and volunteer organizations.
Workshop: Is your rare disease content ready for AI?
A hands-on session for patient organizations, healthcare communicators and rare disease teams. Participants look at the questions patients are likely to ask, how AI tools currently answer them, where the information gaps are, and which content to prioritize. Kelly also covers how to keep patient-friendly content medically responsible and how to improve and repurpose what already exists.
Sessions can be customized by disease, organization and audience.
Available as: conference workshop, staff training, board education, virtual program or strategy session.
About Kelly
Kelly Paul is Vice President of Marketing Operations at a North Carolina digital marketing agency, where she leads CRM implementation, search and AI visibility work. Her earlier career includes marketing leadership in higher education online learning, regional marketing in banking, and university advancement.
In 2015, she was diagnosed with mycosis fungoides, a rare form of cutaneous T-cell lymphoma. That diagnosis led her into rare disease advocacy, patient education and policy work. She serves on the board of the Cutaneous Lymphoma Foundation, and through Fine, But Not Fine she talks openly about living and working with a rare disease, from treatment and insurance to employment and the everyday frustrations that often go unspoken.
Her professional experience gives her the strategist’s perspective. Her patient experience gives her the other half of the story. More about Kelly
Selected speaking
Kelly has presented on marketing, communications, fundraising and leadership for audiences including:
- UPCEA (University Professional and Continuing Education Association): higher education marketing
- Datatel (now Ellucian) user conferences: higher education fundraising and advancement
- GFWC North Carolina: regular presentations to district and state audiences
- Crime Stoppers: social media marketing for community organizations
- North Carolina small business education programs: websites and digital marketing
Leadership and advocacy
- Board member, Cutaneous Lymphoma Foundation
- Rare disease advocate at the federal level, including Rare Disease Week on Capitol Hill, and in North Carolina
- President, Sunflower District, GFWC North Carolina (2026–2028)
- Host, Fine, But Not Fine podcast
Why invite Kelly
- Both sides of the conversation. Kelly understands how organizations think about audiences, messaging and content, and she knows what it’s like to be the patient searching for answers.
- Practical takeaways. Her sessions move past patient storytelling to what organizations can actually change.
- Adaptable formats. She tailors each program to the audience, from clinical and advocacy groups to corporate, nonprofit and community events.
Book Kelly for your event
Kelly is available for keynotes, conference sessions, panels, workshops, staff training, moderating and virtual presentations. Programs can be customized for healthcare professionals, patient organizations, nonprofit leaders, communications professionals and rare disease audiences.
When you reach out, it helps to include your event date, location or virtual format, audience size and topic of interest.
Interested in going beyond a presentation? Kelly also works with organizations on rare disease content and AI visibility. Ask about advisory work