Approach 4: Patience, persistence, and flexibility. How to keep going despite the uncertainty and challenges – rare disease challenges are complex and often require complex solutions.

This approach includes the following key tools:

  1. Tips for staying on track and beating burnout

Advocacy can be hard work and may become overwhelming. There will be challenges and setbacks, and success may not come easily or quickly. A good starting point is to break the goal down into smaller steps.

I learnt pretty early on that effective advocacy is much harder and more time-consuming than it looks.” 32

Nicole Millis, CEO, Rare Voices Australia

The case studies in this Toolkit show common characteristics of organisations that have achieved positive outcomes:

  • They are patient.
    • For example, the Mito Foundation’s campaign to change the law took several years. The Action Plan was not written overnight. It takes time to listen to all voices, formulate a plan, test if that plan might work, and then re-assess if it will not.
  • They are persistent. It is very unlikely that advocacy efforts will be successful on the first attempt.
    • For example, SATB2 Connect approached multiple potential partners, and continued to engage different organisations even after their initial attempts were unsuccessful.
  • They are flexible. The path to success is not always linear, and following the same steps as others will not always work. Being willing to re-assess and revise initial planning after a setback is critical.
    • For example, SCHN realised that further communication and discussion with decision makers was needed after initial briefs did not bring about the desired outcomes.

Key approaches were patient and persistent relationship-building through meetings with key political supporters…and knowing when to go hard and when to be patient with the process.”

Mito Foundation

Throughout the project, we reconvened and discussed who the research audience would be, and what the content and target journals should be for the research, being flexible and yet persisting in reaching our goals.”

SATB2 Connect

It can be disheartening when the best efforts of the team do not achieve the desired outcomes. There may be individual or collective burnout – when people lose motivation and energy to keep trying. The tool below provides strategies to keep the momentum going and combat burnout.

Tips for staying on track and beating burnout

  • Celebrate the small wins
  • Enlist new team members to bring more energy and/or ideas
  • Acknowledge that it is okay not to have all the answers
  • Seek out and listen to the ideas of others – especially when problems arise and a new approach is needed
  • Practice gratitude to yourself, those you work with and even those who have challenged you (since they are helping you to grow and learn)
  • Prioritise self-care, especially if you are leading and/or carrying a lot of responsibility