Connective Tissue,
Genetic & Rare
Conditions

A curated collection of trusted organisations, support services and

practical information for people living with chronic illness.

The Ehlers-Danlos Society

International organisation providing education, research, advocacy, and support for people affected by Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Connective Tissue Disorders Network Australia (CTDNA)

Australia's national peak body supporting people affected by heritable connective tissue disorders through education, advocacy, research, and community collaboration.

Rare Voices Australia

Australia's national peak body advocating for people living with a rare disease and their families.

Rare Portal Australia

A national online resource providing reliable information, support services, and educational resources for people living with rare diseases, their families, and healthcare professionals.

Genetic Alliance Australia

Supports individuals and families affected by genetic conditions through advocacy, education, and peer support.

Marfan Syndrome

Provides education, support, advocacy, and research funding for people living with Marfan syndrome and related connective tissue disorders.

Disclaimer

The information and external links on this page are provided for general educational purposes only. Father Daughter Designs does not provide medical advice, diagnosis or treatment, and inclusion of an organisation or website does not constitute endorsement of all of its content. Always seek advice from your doctor or qualified healthcare professional regarding your individual circumstances.

Our Resources Hub is intended to provide a helpful starting point for people living with chronic illnesses, disabilities and ongoing health conditions. While we have aimed to include a broad range of reputable organisations and support services, this resource is not exhaustive and does not include every chronic illness, condition, organisation or support service available. We are continually working to expand and improve this hub so it can support as many people as possible.

While we make every effort to keep these resources accurate and up to date, websites, organisations and services may change over time. If you believe a resource should be added, updated or corrected, we welcome your feedback, please get in touch via our contact us page.

Connective Tissue, Genetic & Rare Conditions