Australian families affected by Barth syndrome will now have better access to specialist information, support and connection through a new partnership between Mito Foundation and the Barth Syndrome Foundation.
Together, these organizations will provide trusted information, Australian-tailored resources, peer support, and opportunities to take part in research and advocacy.
Barth syndrome is a rare genetic condition and a type of primary mitochondrial disease. For Australian families, its rarity can feel isolating because there are few opportunities to connect locally with others who understand the condition.
Mito Foundation CEO Sean Murray said the partnership will help ensure Australian families affected by Barth syndrome are better connected and supported. Barth Syndrome Foundation CEO Emily Milligan said the collaboration would help extend specialist Barth syndrome support to families in Australia. Donna, an Australian Barth syndrome family member, said the partnership gives families a stronger sense of connection.
Families impacted by Barth syndrome in Australia should not have to face this rare condition alone. By working with the Barth Syndrome Foundation, we can connect families with trusted Barth syndrome knowledge and provide support that reflects the Australian health, disability and research systems. This partnership helps us listen to families, respond to their needs and advocate for improved access to clinical trials and new treatments in Australia.
— Sean Murray, Mito Foundation CEO
Barth syndrome affects families around the world, and the Barth Syndrome Foundation is called by our mission to reach every one of them. Mito Foundation has built exactly the kind of trusted, on-the-ground presence Australian families need, and this partnership lets us pair their local expertise with our specialist Barth syndrome knowledge. We’re grateful for their leadership in the mitochondrial disease community, and proud to work alongside them to serve our patient community in Australia.
— Emily Milligan, CEO, Barth Syndrome Foundation
When your family is affected by something as rare as Barth syndrome, it can be very isolating and feel like no one around you really understands what you are facing. Knowing that Mito Foundation and Barth Syndrome Foundation are working together gives us confidence that Australian families will have somewhere to turn for information, support and connection. It helps us feel part of both a local community and a global Barth syndrome community.
— Donna, Australian Barth syndrome family member
Through this partnership, Mito Foundation and the Barth Syndrome Foundation will keep working together to strengthen support, connection and advocacy for Australian families affected by Barth syndrome.
Families, clinicians and researchers in Australia who would like to learn more about Barth syndrome support and connection opportunities can contact the Barth Syndrome Foundation or Mito Foundation for further information.
About the Barth Syndrome Foundation
Barth Syndrome Foundation and our international affiliates and partners comprise the only global network of families, healthcare providers, and researchers driven by the mission to collectively and tenaciously work toward saving and improving the lives of those impacted by Barth syndrome. Considered a role model in rare disease advocacy, Barth Syndrome Foundation has funded >$7M USD and catalysed over $43M USD in funding from other sources (excluding clinical trials) to advance global scientific discoveries. The recent FDA-approval of the first therapy indicated for Barth syndrome brings us closer to a world in which everyone impacted by Barth syndrome can thrive and live the life they choose. Additionally, BSF provides a lifeline to families and individuals living with Barth syndrome around the world, offering individualized support, educational conferences, aggregated health data through the BarthINSIGHTS patient registry, and collaborations with specialist healthcare providers to define standards of care, treatment, and rapid diagnosis.
You can learn more about the Barth Syndrome Foundation on our website, www.barthsyndrome.org.
