Kris Pierce Email & Phone Number

I am deeply committed to driving meaningful change in the healthcare ecosystem, particularly for those navigating the complexities of rare diseases and chronic health conditions. My journey began as a parent of a child with SCN2A, a rare genetic condition that reshaped my understanding of resilience, advocacy, and the transformative power of lived experience. This personal connection inspires and informs my work every day.In my current role, I bring together patients, families, researchers, policymakers, and industry leaders to bridge gaps and co-create solutions that deliver lasting impact. From leading global advocacy efforts to collaborating on government initiatives and building networks that empower communities, I thrive on transforming challenges into opportunities for progress.At the core of my work is embedding the voices of patients and families into every facet of healthcare research, policy, and delivery. I believe the most innovative and effective outcomes are achieved when diverse perspectives come together to tackle shared challenges. My work spans founding SCN2A advocacy initiatives to leading projects that enhance psychosocial supports for families, always striving to redefine what’s possible in healthcare.Throughout my career, I’ve held leadership roles across health research, rare disease advocacy, and government advisory, with a strong focus on consumer engagement. I’ve built a global network to advance research, awareness, and access to life-changing treatments for rare diseases like SCN2A, and I’ve served as a member of the Evaluation Sub-committee (ESC) of MSAC, shaping health technology assessments to ensure equitable care. Collaborating with organisations like the International Bureau for Epilepsy and Luminesce Alliance, I’ve championed initiatives that elevate the voices of underserved populations and improve outcomes across health systems.My contributions have been recognised with induction into the Victorian Women’s Honour Roll (2022) for outstanding health advocacy and a nomination for the Children’s Healthcare Australasia Medal of Distinction (2022) for advancing paediatric healthcare experiences. I also established the Global SCN2A Industry Council, bringing together industry, advocates, and researchers to prepare for future therapies.