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Loeys-Dietz Syndrome

Loeys-Dietz 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.

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