About CTDNA

CTDNA Overview

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;

  1. Supporting an educated healthcare workforce 
  2. Encouraging informed patients 
  3. 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.

get involved

Volunteering

As a small organisation that is fully volunteer run, and for the most part by people with lived experience of heritable connective tissue disorders (HCTD) building our reach and maximising our impact will be heavily reliant on the size of our volunteer base. 

Should you wish to enquire about volunteering with CTDNA please email: hello@ctdna.org.au with a resume (or summary within the email body) of your experience and the skill set you think would be most useful within the organisation. We want to match volunteers with roles (big or small) that are of interest to them and support their professional capacity building also.

We acknowledge lived experience means you may only have a small amount of time to offer, and that capacity can change at a moments notice. And that is ok – we value good communication and supporting what we each individually can do. 

Areas we currently require assistance include; social media coordination and content creation, business administration, and fundraising support – but we are interested to hear from you, and discuss your individual volunteering goals. 

Download and share our Introducing CTDNA Flyer

Download a flyer giving an introductory overview of CTDNA, our aims and missions as well as the community we represent. Give to to people in your network who may include; healthcare professionals, educators, friends, family and co-workers. The more people that know about, support and follow the journey of CTDNA as we grow the better!

Download flyer –> Public Flyer CTDNA 2025.