A charity supporting Australians impacted by, or living with genetic, heritable and / or rare connective tissue disorders.
WELCOME TO
CTDNA
CTDNA: Empowering Australians Impacted by Heritable Connective Tissue Disorders (HCTD) through advocacy, education, and collaboration.
Join our network of advocates, healthcare professionals, and researchers to improve care and support for those with HCTD. Together, we’ll break down barriers, shorten diagnostic journeys, and enhance research efforts for a brighter future.
About CTDNA
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, Stickler syndrome and Beals 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.
Goals of CTNDA
1
Supporting an educated healthcare workforce
2
Encouraging informed patients
3
Fostering a cohesive and strong local HCTD research community
CTDNA Board
Sue Hutley
Sue is a library manager with extensive experience in not-for-profit corporate governance. Sue has family members diagnosed with Ehlers-Danlos Syndrome. Sue’s professional career has included being a Library Director and CEO of the Australian Library and Information Association. Her voluntary experience spans 30 years in roles of President, Treasurer, Secretary and Member of various library and community organisations. Sue is committed to using her governance, management and leadership experience to improve the lives of individuals and families living with heritable connective tissue disorders, and to grow a sustainable Australian Charitable organisation that can represent the network of stakeholders involved in the care, research and support of the community CTDNA serves.
MBA, GAICD – Director & Chair
Janna Linke
Janna is a pharmacist and more recently a medical writer and Masters of Health Policy Student. Janna lives with Ehlers-Danlos Syndrome. Janna brings to CTDNA a wealth of knowledge including a robust understanding of the Australia Healthcare System, experience gained from working in both the public health care system and in private clinical practice as a medication review pharmacist. Janna has a depth of insight into rare diseases that cannot be gained from learning alone, however with a passion for health promotion, policy and evidence based practice; Janna endeavours to never stop learning. Janna holds Graduate Certificates in Applied Pharmacy Practice, and Management.
B.Pharm (hons) – Director
Michelle Hamer
Michelle is an award winning visual artist with a background in architecture and medical administration. She has a strong interest in the way language, communication and complex systems work. Her creative work includes collaboration and consultation with various professionals and industries including medical researchers and patient groups. Michelle lives with Ehlers Danlos Syndrome and other rare but co-occuring conditions. Michelle brings to CTDNA her experience in creative problem solving and working with Medical Professionals, combined with a deep understanding and knowledge, of the importance of the lived experience in advocacy.
B.Arch (hons) – Director
