Living with a rare disease profoundly impacts mental health and wellbeing for both patients and their families. Join this practical webinar to gain evidence-based tools for supporting the psychological needs of your rare disease patients, including those with intellectual disability.
This webinar will also mark the launch of a new RACGP-approved educational resource designed to support clinicians in providing holistic, person-centred care for people living with rare disease.
Explore practical approaches for:
Enhance your ability to address the full spectrum of your patients’ wellbeing needs.
Louise Healy, Education and Advocacy Manager, Rare Voices Australia.
Louise has extensive experience working as a consultant and coach in the corporate sector and has post graduate qualifications in psychology. Her connection with rare conditions began when her first child was born with a rare metabolic disorder. Louise has been involved in rare disease support and advocacy for over 10 years and she is the current Vice President of the Metabolic Dietary Disorders Association (MDDA).
She has led successful advocacy campaigns for access to medicines and support programs for people with rare disorders of protein metabolism. Louise is a previous RVA Board member, current member of the Queensland Genomics Community Advisory Board and a founding board member of the Global Association for PKU.
The Rare Disease Project ECHO® Clinical Community of Learning Practice is a continuing professional development activity delivered via interactive webinars. The ‘hub-and-spoke’ outreach model connects health providers (‘spokes’) to a multidisciplinary team with expertise in rare disease (‘hub’).
The webinars start with a presentation on a specific topic from an expert. This is followed by reflective discussion, which all participants are encouraged to join.
Rare Disease Project ECHO® is an RACGP-approved CPD activity. However, the sessions are valuable for all health professionals.
Rare Disease Project ECHO® is organised by Rare Diseases NSW (UNSW Sydney; SCHN) and supported by Rare Voices Australia and the Rare Care Centre. It forms part of the RArEST Project, funded by the Australian Department of Health, Disability & Ageing.