About Advocacy Beyond Borders
Advocacy is a marathon, not a sprint, and there will be many winding roads along your journey before you make it to the finish line.
There are people to meet and signposts to guide along the way, but it’s not easy. As a rare disease community, we are often small in numbers and always short on time. Advocacy Beyond Borders has been created to ensure no one is alone on their journey, and to help to navigate the path to the change needed.
We recognise that it is the right of every person living with a rare disease to have access to the highest attainable standard of physical and mental health, and to a standard of living adequate for the health and well-being of oneself, and one’s family. We are committed to working across the globe to make this accessible for our community.
We often see high level policy consultations and documents, but no resulting action or implementation. Advocacy beyond Borders will support patients, patient organisations, health professionals, pharmaceutical companies, pathology and diagnostic organisations and the data and technology industries, to connect, collaborate and share ideas and resources to achieve the best outcome for patient communities.
We will work to develop and support local solutions with local communities, and all relevant experts and stakeholders. We will utilise best practice resources, advocacy strategy and tactics, and delivery models to support efforts and aspirations.
Educational resources will focus on advocacy, relationship building with stakeholders, the importance of data collection, real world evidence for patient centric outcomes, and the reimbursement of medicine/treatment. It will also include advocacy support to government and targeted assistance to build lasting relationships with pharmaceutical companies. Advocacy support will include accessing medicines and treatment, newborn screening and other screening programs, equitable access to testing and support and care, and reimbursement pathways.
Advocacy Beyond Borders can work with you to bring together all stakeholders to develop and deliver a plan and solution for the positive change you are seeking.
A message from Lisa Foster on her involvement as an advocacy lead in New Zealand
Our Team
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Julie Cini, OAM
Global Legacy Network Lead
Director -
Monica Ferrie
Global Advocacy Facilitation Consultant
Director -
Kris Pierce
Global Advocacy Facilitation Consultant
Director
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Global Legacy Lead, Director
Julie founded Spinal Muscular Atrophy Australia in 2005, and grew a successful, not-for-profit patient advocacy group. Throughout the 18 years of the leadership of SMA Australia Pty Ltd, Julie successfully campaigned for increased awareness, diagnosis and better access to treatment for SMA patients.
Julie’s consumer led research has had a great impact on the PBAC and highlighting the severe unmet need within the SMA community for treatment.
She has now moved to a global setting and is supporting patient organisations to connect, collaborate and actively change the landscape for SMA within their own country.
She will continue to also work with policy makers to ensure patient evidence is valued and addressed as part of any patient data that may be required for the patient voice to be heard.
Her results speak for themselves; in four years she has successfully achieved the following:
• In 2018 the first treatment for SMA was approved by the government onto the PBS for those under 19 years living with SMA
• A national pre-genetic screening program called Mackenzie’s Mission was approved; where SMA Cystic Fibrosis and Fragile X to be tested for pre-pregnancy from November 2023 and funded through Medicare
• In 2022 the first gene therapy for SMA was approved for those under 9 months
• In 2021 a national newborn screening program was recommended by the federal government; working with each state for funding announcements respectively
• 2022 also saw the recommendation of the first treatment extend it’s approval for adults
Julie lives by the mantra that “no matter what stage of SMA you’re at, there will be something you can access”. This dream and promise to her daughters, Montanna and Zarlee, that she would ‘fix it’ 18 years ago, is now a reality for the community, creating a lasting legacy in their honour.
In addition to her advocacy work, Julie is a published author. Her book Leaving Life Legacies is her inspirational story of overcoming tragedy, discovering hope and driving change through finding your purpose.
When Julie is not advocating for her community, she stays busy as the owner of two successful bridal dress boutiques in Melbourne.
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Global Advocacy Facilitation Consultant, Director
Monica is inspired by potential and possibility, for individuals and community. Her work is targeted to discover, facilitate, achieve and advocate for them across the world. Driven by values of fairness and equity and local solution and capacity building, Monica is focussed on improving quality of life for the genetic, undiagnosed and rare disease community.
Monica’s current roles include:
• Chief Executive of the Genetic Support Network of Victoria
• Director of Bold and Brave Consulting and Toilet Training Educators
• Treasurer of the Asia Pacific Alliance of Rare Disease Organisations
• Expert Panel Member of Collaborative Global Network for Rare Disease
• Board member of the Balibo House Trust
• Honorary Fellow of Melbourne UniversityMonica is an experienced speaker at national and international level and has worked in the Asia Pacific in local projects with United Nations Development Projects and World Bank projects. A commitment to being active at all levels and in all environments, Monica is involved in national research projects, steering committees, consumer advisory groups and think tanks as an initiator, participant and chair.
Experience in senior leadership roles in Government, Education and the business sector, and a commitment to community provide a foundation for providing a strong voice and making a difference across the globe.
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Global Advocacy Facilitation Consultant, Director
Kris is an esteemed specialist in Consumer and Patient Engagement within the field of Rare Epilepsy, bringing a wealth of experience in health science, wellness, and patient advocacy.
Possessing a Masters of Wellness from the Royal Melbourne Institute of Technology (2013), a Master of Health Science with a major in Health Promotion and Education from Deakin University (1998), and a Certificate of Nursing from the Royal Melbourne Hospital (1990), Kris has demonstrated a commitment to ongoing education and professional development.
Kris has undergone specialised training, earning a Certificate in Consumer Leadership from the Health Issues Centre. Serving as the Director of Consumer Advocacy and Engagement at Child Unlimited, University of New South Wales, since April 2020, Kris showcases exemplary leadership in consumer involvement. She is instrumental in developing and implementing Consumer Engagement Frameworks, overseeing the Child Unlimited National Consumer Board, and pioneering a Youth Mentor Program for young advocates.
Beyond her role at Child Unlimited, Kris held the position of Rare Epilepsy Lead at the Epilepsy, where she played a key role in developing engagement frameworks, leading projects, and managing resources for families affected by rare complex epilepsy. Kris is integral to the National Rare Epilepsy Consumer Board and serves as the Project Manager for the Rare Epilepsy Caregiver Retreat.
Kris actively contributes to global and national organisations, such as the Global Epilepsy Research Alliance, International Bureau of Epilepsy, QUOKKA, Safer Care Victoria, NHMRC/MRFF, Royal Children’s Hospital, RDNow Community Engagement Committee, Rare Epilepsy Network, Global Genes, SCN2A Australia, and GETA. She co-founded and leads several of these organizations, showcasing her dedication to enhancing outcomes in rare epilepsy and health research.
Kris has made scholarly contributions, co-authoring influential publications in top-tier journals. She has served as Chief Investigator and Associate Investigator in numerous MRFF research grants, playing a crucial role in the development of key consumer engagement resources.
Her exceptional work has earned Kris recognition, including her induction into the Victorian Women Honour Roll in 2022 and a nomination for the Children’s Healthcare Australasia Medal of Distinction in the same year. Kris is also a Life Member of the Sandringham District Netball Association, reflecting her enduring commitment to community service.
