How We Can Support You
Living with cardiomyopathy, or supporting someone who is, can be complex and difficult to navigate. Reliable information, practical support, and a strong patient voice all make a measurable difference. CMANZ aims to help people feel connected, informed and represented across the health system.
Support
- Access to a contact person (non-clinical): You are welcome to get in touch for initial guidance, help to understand available resources and peer support.
- Private, moderated Facebook community: A safe space to share experiences, ask questions and connect with others who understand cardiomyopathy firsthand.
- Regular events and information sessions: Online and in-person opportunities to learn from clinicians, hear from other patients, and build community.
Information
- Clear explanations of cardiomyopathy: Easy-to-understand overviews of the different cardiomyopathy types, how they are diagnosed, and current management approaches.
- Access to expert webinars: Sessions with clinicians, researchers and allied health professionals on diagnosis, treatment options, genetics, and day-to-day living.
- Regular newsletters: Research updates, treatment developments, patient stories and organisational news published on our website and emailed to subscribers.
- Information about research opportunities: Access to information about registries and current clinical trials
Advocacy
- Submissions to government and regulatory processes: Including inquiries, advisory committees and reimbursement bodies.
- Representation in health sector discussions: Participation in conferences, roundtables, steering committees and consumer engagement activities.
- Strengthening the patient voice: Ensuring cardiomyopathy patients and families are recognised in policy, research, service design and clinical decision-making.