Sue and Janna RVA RD Day event 

 

 

        Photos: Sue & Janna outside Parliament House, Canberra for Rare Disease Day 2024

          

Welcome From Our Founding Board of Directors

Sue, Janna and Michelle – the CTDNA Founding Directors welcome you to the Connective Tissue Disorders Network Australia (CTDNA) website. 

CTDNA is a national not-for-profit health promotion charity registered with the Australian Charity and Not-for-profits Commission (ACNC). ACNC registration was granted in early January 2024! We are a very young organisation that is entirely volunteer run – meaning there is lots of space for CTDNA to grow. There are gaps to fill, and many more connections to make. 

We hope that you enjoy being a part of our community – over time there will be ways you can get involved if you wish, and this will be communicated in the coming months. Follow CTDNA on social media (Instagram, facebook, Twitter X and LinkedIn) to ensure you don’t miss these updates. Updates will include what we are doing, who we are speaking to, and the overall aims and goals of the organisation.  

The primary goals of CTDNA centre around advocacy, education, research and of course – collaboration. Collaboration and inclusion of all stakeholders to include patients and carers will be integral always, to the path CTDNA travels. 

Since being incorporated, CTDNA has already forged some strong community connections and been involved in important awareness days and in attendance at key conferences supporting those impacted by genetic, heritable, and / or rare, connective tissue disorders. 

The below list is just a snapshot of where we’ve been, who we’ve spoken with, and what we’ve done this year so far;

    • Launched the CTDNA website and social media accounts
    • Sue and Janna attended the Rare Voices Australia, Rare Disease Day event at Parliament House in Canberra on the rarest day of the year, February 29; with Janna’s local MP Allegra Spender in attendance (self-funded)
    • Janna attended the Australian POTs Foundation Conference in Adelaide which focused heavily on Ehlers-Danlos Syndrome and different types of dysautonomia (self-funded)
    • Sue and Michelle attended an NDIS stakeholder engagement session with Rare Voices Australia
    • We met with lead researchers at a key Australian research institute to discuss rare, genetic & heritable connective tissue disorders
    • Sue attended the Marfan Syndrome and Aortopathy Conference in Brisbane (self-funded)

CTDNA is a partner organisation with Rare Voices Australia and a Global Affiliate with the international Ehlers-Danlos Society.  

Again, we are so chuffed with the warm response CTDNA has received already from the community, the CTDNA board of directors and the organisation as it evolves are here for you. To improve all levels of access to healthcare, and better the management of all Australians living with, caring for, or more broadly impacted by heritable disorders of connective tissue. Stay tuned! 

Yours sincerely and warm regards

Sue Hutley, Janna Linke and Michelle Hamer.