In this episode:

• Dealing with common and individual issues that make them difficult to identify
• They need help because they are often misunderstood and left out
• Sharing information and resources with the patient to provide clarity is important, as well as continuous dedication and support for the situation
• Set of resources and teachings that are important for GPs to significantly improve the handling of rare disease

Expert: Dr Elizabeth Palmer, Clinical Geneticist

Host: Dr David Lim, GP and Medical Educator

Total time: 27 minutes

Recommended resources:

• Rare diseases are not so rare | Healthed
• The national recommendations for rare disease health care | Rare Voices Australia
• Resources from the RArEST (rare disease awareness, education, support and training program), funded by the Australian Department of Health, Disability and Ageing are now available: RArEST project

Includes:
– Rare disease-focused mental health training and digital mental health resources;
– Project ECHO® online community of clinical learning practice;
– Free online learning module — this is a Royal Australian College of General Practitioners (RACGP) – approved continued professional development (CPD) activity under the RACGP CPD Program;
– Rare disease module on the Lyfe Languages Indigenous language medical and scientific platform;
– Rare disease case-based learning for GPs in the RACGP check activity;
– Australian Rare Disease Organisation Community of Practice;
– Multistakeholder toolkit; and
– Series of health system simulation workshops

• The RARE portal is Australia’s growing national resource for rare diseases, and includes additional information for health care providers, families and researchers: Rare Awareness Rare Education (RARE) Portal
• Interactive webinar aimed at supporting clinicians embedding the National Recommendations into their practice: Rare Disease ECHO® Community of Clinical Learning Practice