Description

Expert Patient Engagement & Digital Consultant | Rare Disease Focus

Digital & Patient Engagement Consultant – Rare Disease Sector

Seasoned digital health and patient engagement consultant with over 20 years’ experience in rare disease. I design and deliver audit-ready, multichannel digital programmes that connect pharma organisations with underserved patient communities, drive recruitment and retention, and guarantee full GDPR compliance. Proven expertise in patient identification, behavioural analytics, co-creation frameworks and ROI-focused execution.

Core Services

Digital Engagement Strategy End-to-end planning and execution across email, social media, web platforms and virtual events.
AI-Driven Patient Identification Advanced analytics and real-world data to locate and engage hard-to-reach rare-disease cohorts.
Multichannel Campaign Delivery Seamless coordination of webinars, microsites, chatbots and mobile apps for unified patient journeys.
Patient Advisory & Co-Creation Establishment and facilitation of online communities, advisory boards and workshops to embed patient insights.
Analytics & Performance Optimisation KPI dashboards, regular reporting and iterative refinements to maximise impact and ROI.
Compliance & Traceability GDPR-aligned processes and audit-ready documentation to ensure regulatory confidence.

Why Work With Me

Over two decades of digital transformation and rare-disease engagement
Deep understanding of pharmaceutical regulatory, clinical and commercial landscapes
Collaborative, co-design approach ensuring patient perspectives shape outcomes
Hands-on leadership of cross-functional teams in complex environments
Data-driven methodology with a focus on continuous improvement

Industry field of expertise

Languages

English
Native or bilingual

Workplace preferences

Remote only

Primarily works remotely

swii.ch health
Specialist in Rare Disease Patient Engagement | EU JCA Patient Strategy | Digital Health Innovation
January 2015 - Today (11 years and 5 months)
Manchester, UK
At swii.ch health, we transform rare disease engagement with patient-led strategies and digital innovation. By collaborating with patients, caregivers, and advocacy groups, we deliver solutions that are authentic, impactful, and aligned with real-world needs. Our expertise includes: AI-Driven Patient Identification: Reaching underserved rare disease populations. Behavioral Insights: Informing strategies through patient journey understanding. EU JCA Patient Strategy: Supporting compliance with patient-focused regulatory frameworks. Digital Multichannel Campaigns: Amplifying engagement across platforms. With a sole focus on rare diseases, we bridge gaps in care and advocacy, helping biopharma turn insights into action. Visit swii.ch health to learn more.
Rare Focus Newsletter
Founder & Curator | Rare Focus Newsletter
March 2024 - Today (2 years and 3 months)
Rare Focus is a growing thought leadership newsletter with over 355 members, offering actionable insights and strategic perspectives on the rare disease landscape. Designed for biopharma professionals, healthcare leaders, and advocates, Rare Focus explores key challenges and opportunities in patient identification, advocacy, and engagement. Key highlights: Featuring advice from patient advocates and real-life patient stories to provide authentic, community-driven insights. Delivering regular updates on rare disease trends, including EU JCA strategies, patient behaviors, and digital innovation. Building a dedicated and growing audience of 355+ industry professionals within 11 months of launch. Sharing practical strategies to address real-world challenges in rare disease care and patient outreach.
The Rare Disease Series
Founder
June 2018 - Today (8 years)
Co-founded a not-for-profit initiative raising awareness of rare diseases through authentic storytelling. Produced impactful films that reached thousands globally, showcasing the stories of patients, caregivers, and healthcare professionals. Partnered with advocacy groups to drive awareness and inspire action. Increased visibility for rare diseases through campaigns that connect communities and drive engagement. Check it out and share your stories at www.rarediseaseseries.com