I am a patient engagement expert and founder of the Thyroid Disease Awareness Kenya Foundation, where I lead initiatives that bridge critical gaps between patients, healthcare systems, and public understanding. My work focuses on advancing thyroid disease awareness, improving access to accurate information, and shaping patient-centered approaches within healthcare.
With lived experience and strategic insight, I design advocacy programmes, campaigns, and partnerships that elevate patient voices and drive meaningful change. I also consult on patient engagement, helping organisations align their services with real patient needs while strengthening trust and outcomes.
My mission is to transform how thyroid disease is understood and managed across communities, positioning patient experience as a central pillar in healthcare delivery, policy, and innovation.

Ursula's leadership is grounded in lived experience as both a patient and caregiver across ultra-rare disease, asthma, rheumatology, gastroenterology, diabetes, obesity, cardiovascular disease, cancer, and others. This has given her a deep understanding of what day-to-day management truly requires – and why patient-centred solutions must be built for real life.

She is widely known as an influential activator – adept at building aligned teams, navigating complexity, and delivering initiatives that gain global attention and become best practices.

Monica is a lived experience educator, advocate, and systems collaborator
working at the intersection of healthcare, education, and family engagement. She is the mother of two neurodivergent sons and has spent over a decade advancing family-
centred care at Holland Bloorview Kids Rehabilitation Hospital, Canada’s largest
children’s rehabilitation hospital. Monica brings the family perspective into the design
and delivery of family-centred care, including contributing to the redesign of autism
diagnostic pathways and co-developing supports for families navigating long wait times.
She is a Family Advisory Council Member with Canada’s National Autism Network, a
Lived Experience Advisor with Healthcare Excellence Canada, and a North American
ambassador for the International Society for Patient Engagement Professionals
(ISPEP). Monica is completing a Doctor of Education with a focus on neurodiversity,
inclusive education, and system redesign.

Mansi is a public health researcher and policy leader with over 14 years of experience advancing health and nutrition initiatives across India and globally. As Director (Research) at HRIDAY, she leads evidence-based programmes focused on non-communicable diseases, tobacco control, maternal and child nutrition, obesity, and community engagement. Dr. Chopra has worked closely with government agencies, UNICEF, academic institutions, and international organizations to shape health policies, strengthen partnerships, and drive impactful advocacy. A PhD in Adolescent Nutrition and Lifestyle from AIIMS and Lady Irwin College, she has secured significant research funding, authored numerous scientific publications, and contributed to national and global health strategies. She also serves in international leadership roles, including with the WHO Global Coordination Mechanism on NCDs and the Society for Research on Nicotine and Tobacco. Her work bridges research, policy, and implementation to improve population health outcomes.

Shilpa Vignesh Shenoy is a healthcare and patient engagement leader with over 15 years of experience across the pharmaceutical and healthcare services sectors. As Vice President of Patient Care and Engagement at 4baseCare, she leads initiatives that place patients at the centre of healthcare delivery, building digital communities and patient support programmes that improve access, engagement, and outcomes.Throughout her career, Shilpa has partnered with pharmaceutical organisations to design and implement patient-centred solutions, leveraging real-world evidence and patient insights to shape strategy and advance personalised care. Her expertise spans patient advocacy, healthcare consulting, pharmacovigilance, training, and stakeholder engagement, with a strong track record of developing scalable programmes that enhance the patient journey. With a Master's degree in Microbiology and extensive industry experience, Shilpa is passionate about fostering meaningful collaborations that empower patients and healthcare professionals while driving innovation in patient-centred healthcare

Vanessa is a global patient advocacy and engagement consultant with over 14 years of experience driving patient-centric research and healthcare innovation, particularly within the rare disease space. She currently serves as Head of Global Patient Advocacy and Engagement at CDG & Allies PPAIN (UCIBIO NOVA School of Science and Technology), and as an Adjunct Professor at Universidad Europea, where she teaches stakeholder engagement and research methodology. Her career spans leadership roles at Santhera Pharmaceuticals, Galderma, and LYSOGENE, alongside advocacy work with the World CDG Organization and IRDiRC. Vanessa holds a PhD in Basic Biomedical Sciences from Universitat Pompeu Fabra and an MBA from IAE Paris - Sorbonne Business School. Her work centers on co-creation methodologies that embed the patient voice into research, drug development, and healthcare policy.

Beth is a Rare Disease and Cystic Fibrosis Patient Advocate based in the Greater Toronto Area, and a proud recipient of the King Charles III Coronation Medal. Her advocacy journey began in 2002 when her daughter Madi was diagnosed with Cystic Fibrosis, leading her to leave her career as a financial planner and dedicate herself to improving Canada's drug approval and reimbursement system. Beth and Madi gained national attention for their two-year campaign at Queen's Park to secure public formulary access to a life-changing gene modulator therapy, a victory that has since fueled Beth's broader push for systemic reform. She is Co-Founder of the Ontario Rare Action Group, sits on the Patient Advisory Committee at the Health Research Foundation, and serves as Rare Disease Organization Liaison at the University of Toronto. Beth will also join Roche's Patient Co-Creation Council in 2026. Through nearly two decades of advocacy, she has built lasting relationships with policymakers to advance faster, fairer access to innovative therapies for rare disease patients.

Bio coming soon

Chris has dedicated over a decade to advancing viral hepatitis policy and patient advocacy in the Philippines. Elected Vice President of the Yellow Warriors Society Philippines in 2010, he became President later that year and led the organisation until 2020, successfully advocating for a government health program and an anti-discrimination bill for people living with viral hepatitis, resulting in pilot programs by 2019. He continues to advise YWSP Inc. and serves on the HBV Community Advisory Board. Since joining the Philippine Alliance of Patient Organizations in 2017, becoming Vice President in 2019, Chris has championed health literacy across patient communities. He has also developed expertise in Health Technology Assessment, serving as a Civil Society Representative on a national HTA Council and as a member of Health Technology Assessment International. This blend of grassroots advocacy and policy expertise extends to his research contributions, including a co-authored Lancet publication and ongoing work on Clinical Practice Guidelines for liver, prostate, and thyroid conditions.

Jon is a patient engagement specialist with over 14 years' experience working across APAC, US and EMEA. He specialises in translating patient insights into actionable strategy, partnering with industry, patient organisations and clinical stakeholders to co-create solutions across clinical development, commercial, medical affairs and market access.

Jon has led global patient engagement programmes across several therapy areas, supporting major pharmaceutical and life science companies to develop and launch products that meet the needs of consumers.

With a career spanning clinical nursing, the non-profit sector, biopharma and healthcare consultancy, I am a dedicated specialist focused on bridging the gap between raw patient experience and actionable organisational strategy. My professional foundation in frontline oncology and haematology nursing instilled a deep commitment to ensuring the lived experiences of patients and caregivers are central to healthcare decision-making.

I am particularly passionate about the professionalisation of patient engagement, advocating for it as a strategic discipline rather than a secondary function. I believe in treating patient journeys as living assets that identify systemic levers for change in healthcare experience . A collaborative advocate for excellence, I am driven by the opportunity to share best practice amongst peers globally, ensuring we improve real-world health outcomes.

Naomi brings extensive experience in clinical research and a longstanding commitment to the patient community. Prior to joining Bionical Emas, she spent many years at Great Ormond Street Hospital in London, where she worked as a Senior Clinical Research Nurse caring for patients and families participating in clinical trials and early access programs
In her role as Director of Patient Advocacy at Bionical, Naomi plays a pivotal role in advancing the company’s mission to deliver life‑changing medicines to patients worldwide. She works in close collaboration with patient advocacy organisations to develop a deep understanding of the diverse needs and complexities of the communities they represent. Her work is centred on amplifying the patient community voice and educating patient groups on potential early access pathways in a compliant, ethical, and patient‑centred manner.