Marfan syndrome
Marfan syndrome
| Contact: | Connective Tissue Disorders Network Australia (CTDNA) |
| Email: | hello@ctdna.org.au |
| Website | Click here |
| More info: |
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. |
| About: | Marfan syndrome is an inherited condition that affects the connective tissue of the heart and blood vessels (cardiovascular system). The musculoskeletal system (ligaments and muscles) and ocular system (eyes) are also affected. Major symptoms also include unusual height, large hands and feet, and involvement of the lungs. Symptoms vary greatly among affected individuals. |
| Useful links: |
Additionally, there are a number of other dedicated support groups in Australia. Please note, CTDNA is not directly affiliated with these groups, they are independently managed and operate under their own governance. The Marfan Association QLD |
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