Ehlers-Danlos syndrome
Ehlers-Danlos syndrome
| Contact: | Connective Tissue Disorders Network Australia (CTDNA) |
| Email: | hello@ctdna.org.au |
| Website | Click here |
| More info: | 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. |
| About: |
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. 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. |
| Useful links: |
Additionally, the EDS Australia National Support Group Melbourne (www.facebook.com/groups/289279201722182/) is an independently run Australian support group. CTDNA is not directly affiliated with this group, which is independently managed and operating under its own governance. |
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