4.5: Employee and Volunteer Self-care

Throughout the codesign process, people living with a rare disease spoke of the importance of self-care in managing stress, anxiety and pressure associated with rare disease organisation leadership roles. Proactive self-care is essential for those in rare disease...

4.4: Strategies for a Mentally Healthy Workplace

When thinking about mental health and wellbeing supports, rare disease organisation may want to consider: Approaches and mechanisms in place to support mental health and wellbeing in online forums. Policies and procedures that support the mental health and wellbeing...

4.3: Mental Health and Wellbeing of Staff and Volunteers

It is important that rare disease organisations also look after the mental health and wellbeing of their own staff and volunteers, who often have lived experience of rare disease. Research suggests that mental health providers, including Mental Health First Aiders,...

4.2: Boundaries of Expertise and Knowledge

Those with a leadership or support role in a rare disease organisation are managing a range of demands and challenges.  Rare disease organisation leaders who assisted in the codesign of this project reported a deep sense of responsibility, care and concern for...

4.1: The Role of Rare Disease Organisations

Mental health and wellbeing supports required by the rare disease community are diverse and complex.1,2 As most mental health services and resources are generalist in nature, they may not address some of the specific mental health challenges that are unique to rare...