RARE Advocacy Exchange 2025 Session 2 Amy Brin

Whether advocating for themselves or a loved one, navigating healthcare, or creating change within their community, leadership becomes essential for those of us dealing with rare diseases in our lives. Global Genes’ RARE Advocacy Exchange is a series of virtual events designed to empower, equip, and elevate individuals with the leadership skills to help make a change.

Harnessing your Values to Fuel your Leadership Strategy
Wednesday, March 12, 2025

Amy Brin, MSN, MA, PCNS-BC, Amy Brin Consulting, LLC

In this powerful session, Amy Brin explored how authentic, values-driven leadership is essential for rare disease advocates facing uncertainty, rapid change, and emotional strain. Drawing from her personal and professional journey—spanning pediatric hospice care to executive leadership—Amy made the case for a radical shift in how leaders are developed and sustained. Rather than pursuing external benchmarks of success, she challenged attendees to look inward, identify their core values, and lead from a place of truth, purpose, and resilience.

Amy’s concept of “soft heart, strong back” captured the balance leaders must strike—being compassionate and approachable, while also grounded, decisive, and strong. Through storytelling, real-life challenges, and deep reflection, she encouraged advocates to show up fully as themselves, embrace vulnerability as strength, and reject outdated models of hierarchical, performative leadership.

Presenter Amy Brin was joined in workshop breakout rooms by:

• Amber Denton, NBIA Disorders Association
• Lakeia Nard, Melanin Children Matter

Key Takeaways

• Authenticity is a Leadership Asset: Showing up as your true self builds trust, deepens relationships, and increases impact.
• Values Anchor Your Strategy: Defining and aligning your actions with your core values creates sustainable leadership.
• You Are the Asset: Leaders must invest in their own emotional, mental, and strategic well-being to continue serving others.
• Modern Leadership Demands Change: Traditional top-down models no longer serve today’s complex, interconnected environment.
• The Personal is Professional: Lived experience, especially in the rare disease space, can be a leadership superpower.

Actionable Next Steps

1. Commit to Reflection: Block time for personal leadership journaling or values assessment.
2. Build a Leadership Tribe: Connect regularly with mentors or peer leaders for support and insight.
3. Define Your Leadership Strategy: Use language that reflects your values (e.g., “soft heart, strong back”).

Practice Radical Authenticity: Lead with transparency and compassion, even in tough moments.

The above March 12th session with Amy Brin had more questions than we had time to address. So Amy generously agreed to answer them in this bonus follow up session held on March 21.