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.
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Director, Child UnlimitedUnswWurtulla, Qld, Au -
Director, Child UnlimitedUnsw Apr 2020 - PresentAustraliaChild UnLimited is an Australian network of researchers, clinicians, advocates and families with a shared vision: to improve the clinical care and quality of life of children, adolescents and young adults living with a chronic illness or disability. -
Global Epilepsy Needs Study - Expert PanelInternational Bureau For Epilepsy Jan 2024 - Present -
Community Council MemberInternational Bureau For Epilepsy Jan 2023 - Present -
Committee MemberAustralian Government Department Of Health And Aged Care Jun 2024 - PresentAustraliaMember, Medical Services Advisory Committee- Evaluation Sub Committee -
FounderScn2A Australia Jan 2019 - PresentMelbourne, Australia -
Health And Disability Advocate & Consumer Engagement ConsultantKrispconsulting Jan 2000 - PresentQueensland, Australia
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Co-FounderGenetic Epilepsy Team Australia Jan 2017 - PresentMelbourne, AustraliaLead patient group for rare and genetic epilepsies. -
Chair - Rare Advocacy Leadership CouncilGlobal Genes Sep 2022 - Jul 2024 -
Rare Global Advocacy Leadership CouncilGlobal Genes Aug 2019 - Sep 2022 -
Rare Epilepsy LeadEpilepsy Foundation Of Australia Feb 2021 - Feb 2024Melbourne, Victoria, Australia -
Community Advisory Committee - Co-ChairThe Royal Children'S Hospital May 2019 - May 2023Melbourne, Australia -
Family Advisory CommitteeThe Royal Children'S Hospital 2016 - May 2023Deputy Chair - Consumer Representative -
Caregiver Advisory CouncilPraxis Precision Medicines, Inc. Jun 2021 - Nov 2022 -
Co-Founder Of SleephubSleephub Mar 2014 - Mar 2022Melbourne, AustraliaUp to date information on sleep disorders and healthy sleep from experts in the field. Sleep Hub, provides information on a range of sleep disorders, as well as how to optimise sleep for getting the most out of every day. Follow us for updates on the latest on sleep. -
President/Executive Committee MemberSandringham District Netball Association May 2016 - May 2019Thomas St, HamptonPresident of the Sandringham District Netball Assocation
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School CouncilGlenallen School Jan 2014 - Jan 2016Glen WaverleyGlenallen School Council held the role of secretary.
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Member Of The BoardMoira 2007 - Dec 2014Hampton EastBoard of Management member in local disability organisation representing people with disabilities.http://www.moira.org.au
Kris Pierce Education Details
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Governance -
Complete With Distinction -
Royal Melbourne HopsitalDistinction
Frequently Asked Questions about Kris Pierce
What company does Kris Pierce work for?
Kris Pierce works for Unsw
What is Kris Pierce's role at the current company?
Kris Pierce's current role is Director, Child Unlimited.
What schools did Kris Pierce attend?
Kris Pierce attended Australian Institute Of Company Directors, Rmit University, Deakin University, Royal Melbourne Hopsital.
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Kris Pierce
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