About CTDNA
About Us
Thousands of Australians live with genetic, heritable and / or rare connective tissue disorders; also referred to as; heritable connective tissue disorders (HCTD). Ehlers-Danlos syndrome, Marfan syndrome, Loeys-Dietz syndrome and Stickler syndrome are just a few of the many dozens of identified HCTD.
Connective Tissue Disorders Network Australia (CTDNA) is the collaborative effort of people both living with, and / or caring for those with HCTD. Individuals are often both; a patient, and a carer.
CTDNA seeks to establish a national network of lived experience advocates, healthcare professionals and researchers with an interest in HCTD. A network of like minded individuals coming together to better the care and management of Australians impacted by HCTD.
Goals of CTDNA will include;
- Supporting an educated healthcare workforce
- Encouraging informed patients
- Fostering a cohesive and strong local HCTD research community
CTDNA maintains a commitment to working alongside healthcare professionals, researchers, and people with lived experience, and will include all relevant stakeholders in conversations and efforts undertaken to see the barriers that restrict or delay diagnosis and the care of HCTD realised and removed.
CTDNA will work to achieve these goals by being an active participant in national level advocacy efforts that are at their core, both person centred and co-designed at every step.
There is often a significant delay in the diagnosis of HCTD, this is known as the Diagnostic Odyssey among patients, their families and the healthcare professionals caring for people with HCTD.
CTDNA will work to assist the Australian Rare Disease Community at large to ensure the pillars (Awareness and Education, Care and Support, Research and Data) of the National Strategic Action Plan for Rare Diseases, introduced in February 2020 remain central to the outcomes and activities of the organisation.
CTDNA was established in early 2024, and is completely volunteer run. We are a small organisation, in the start-up phase – as such we appreciate your patience as we develop the charity.
To view the CTDNA Governing Document click here.
