Federal Government grants $300K to expand SPHERE-supported “My Rare Mate” program

In a major step forward for rare disease (RD) healthcare, the Federal Government has awarded a $300,000 grant to UNSW, Sydney to expand much needed work to co-design optimal models of rare disease health care. This will support the innovative My Rare Mate project, led by Dr. Elizabeth Palmer and Professor Adam Jaffe, which aims to explore how digital innovation can be part of the picture to improve the healthcare journey for the 1 in 12 Australians living with a rare disease. This investment builds upon the initial funding provided by SPHERE’s Partnership Support Grant, demonstrating how strategic support can unlock additional resources to drive meaningful healthcare improvements.

“SPHERE’s Big Ideas supports our partners to find matched funding from co-investors to amplify the magnitude of the contribution from both partners. My Rare Mate is yet another exemplar in a pipeline of innovation that our communities want us to solve. We can’t do it in isolation. We can only do it together,” says Executive Director, Professor Chris White.

My Rare Mate aims to address the fragmented and often inadequate care experienced by Australians living with rare diseases. Due to their complexity and the scarcity of medical expertise, patients living with rare disease frequently face long diagnostic delays, limited treatment options, and poor coordination between specialists and primary care providers. The project will explore the co-design of a digital platform, My Rare Passport Portal, which aims to act as a centralised hub for patient care. This portal could include up-to-date patient summaries, management plans, and emergency protocols, along with an AI-driven chatbot providing timely expert guidance.

Additionally, as 95% of people living with a rare disease lack a targeted treatment, My Rare Mate will explore how patients could be seamlessly connected with clinical trials and research opportunities. A key issue in rare disease is the impact on the overall wellbeing of the patient and their family, with patients identifying a key need for proactive mental health support. The program will also explore how My Care Portal can unlock self-assessment tools and mental health resources to support overall well-being. By integrating these innovations, My Rare Mate aims to improve health outcomes, empower patients, and streamline healthcare delivery.

The new Department of Health and Aged Care government funding secured by the UNSW led team in partnership with the national peak body for people living with a rare disease, Rare Voices Australia, will support key initiatives under three main streams:

Supporting Individuals Living with Rare Disease

Rare Voices Australia (RVA) will expand mental health first aid training for RD organisations, strengthening the sector’s capacity to support emotional well-being. Additional communication initiatives will increase awareness of rare disease-related mental health challenges among healthcare professionals. These could be key resources to feed into My Care Portal.

Health Professional Education and Training

The University of New South Wales (UNSW) will run a series of Rare Disease Project ECHO community of clinical practice sessions, co-designed with primary care clinicians. Discussions will focus on how health care providers can better support the holistic care of all people living with rare disease and will include a session focused on digital innovations in rare disease care informing the codesign of My Rare Mate.  

Co-design for Systemic Improvement

A multi-stakeholder roundtable will explore how international rare disease care models can be adapted to the Australian healthcare system. This will guide policy development to ensure equitable access to expert care and emerging technologies, including digital innovations, particularly in regional and rural areas.

Dr. Palmer emphasised the significance of the funding.

“SPHERE has been a brilliant supporter of our innovative rare disease work. This critical funding will facilitate key co-design work, which means we can fairly renumerate experts in rare disease health care, including the people living with these conditions, to move close to sustainable solutions which will ensure no one living with a rare disease is left behind.”

SPHERE’s commitment to fostering research-driven healthcare solutions continues to pave the way for national-scale impact. The My Rare Mate project shows how early investment in innovative ideas can attract further funding and drive lasting improvements in patient care.

M