RARE Advocacy Exchange 2025 Session 1 Kick Off with Zoe Manville

March 14, 2025

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.

Kick off & Keynote: When Leadership is Thrust Upon You Monday, March 10, 2025
Our Speakers are:

Charlene Son Rigby, Rare Mom, CEO of Global Genes
Zoe Manville, Rare mom; Singer of Portugal. The Man
Mel Dixon, Rare mom, Cure DHDDS
Kara Ryska, Host of The Special Needs Mom Podcast and The Pathway to Peace Coaching Community

Zoe Manville and Mel Dixon shared deeply personal and moving stories about their transformation into rare disease advocates and founders of CURE DHDDS. Their journeys began as parents navigating the shock, fear, and uncertainty of ultra-rare diagnoses for their children. As they moved through isolation and survival mode, both found strength and purpose in building communities, pursuing scientific research, and organizing support for other families. Moderated by Kara Ryska, the session illuminated the emotional resilience and evolving leadership that rare advocates develop—not by choice, but by necessity.

Key Takeaways

Leadership Emerges from Necessity: Advocates often don’t set out to lead—they rise because no one else is doing it.
Start Small, Then Build: A single podcast, phone call, or email can spark meaningful action and momentum.
The Power of Partnership: Mel and Zoe’s international collaboration illustrates the strength of shared vision and mutual support.
From Isolated to Informed: Educating oneself on complex science, reaching out to researchers, and connecting to peers can shift despair into progress.
Creativity Can Be a Platform: Zoe used her music career to raise awareness, demonstrating how personal gifts can be repurposed for advocacy.
Self-Care Is Essential: Advocates must recognize burnout and honor their own limits—balance is critical to sustain long-term impact.

Actionable Next Steps

Connect with Other Advocates: Join disease-specific or umbrella Facebook groups, listen to rare disease podcasts (e.g., Once Upon a Gene), and reach out to others walking similar paths.
Build an Advocacy Group: Even if you’re new, begin by securing a domain, launching a simple website, and telling your story—support will grow over time.
Engage Researchers: Read scientific papers relevant to your disease, contact lead authors, and express interest in collaboration or advisory board participation.
Leverage Personal Platforms: Use your talents—whether music, writing, organizing, or fundraising—to raise visibility and funds.
Document & Share Progress: Establish a registry, capture patient stories, and build partnerships that strengthen your community’s voice in science and policy.