RARE Advocacy Exchange Session 4 : From Conflict and Competition to Cooperation and Collaboration

May 12, 2025

In this May, 2025 Rare Advocacy Exchange session, leaders from across the rare disease ecosystem came together to explore the complexities of collaboration, competition, and personal growth in advocacy organizations. The panelists shared real-life journeys of organizational mergers, founder syndrome, and learning to work in parallel.

Some rare disease advocates may find that multiple advocacy organizations are involved in their cause. Ideally, these organizations cooperate and work well together. But what can you do if they are not? This session will help you navigate these challenges.

Introduction:
Stacey Beal, a National Patient Engagement Director at Pfizer

Moderator:
Sarah Shaffer, Rare Mom, Author
Panelists:
Emily Amerson MS, Rare Parent, President, CTNNB1 Connect & Cure
Chandler Crews, Rare individual, Achondroplasia, The Chandler Project
Payal Patel, Rare Mom, DLG4

“You have to find smaller projects to collaborate with them at first. Start with something small that you agree on. Maybe it’s fundraising, maybe it’s a small research project. See how it goes and then hold that olive branch. And look how well we work together.” – Payal Patel

Key Themes:

From Conflict to Collaboration

Mergers and partnership conversations are often driven by community confusion, duplicative efforts, and competition for resources.
Real collaboration requires emotional maturity, transparency, and a willingness to let go of ego and “founder syndrome.”

Working in Parallel

It’s okay to have multiple organizations with different missions (e.g., research vs. community support), as long as there’s mutual respect and communication.
Not all collaboration must lead to merger—coordination on shared efforts can be enough.

Equity Over Seniority

Longevity of an organization shouldn’t equate to dominance in decision-making.
Emerging leaders and organizations bring fresh value and should be treated equitably, especially in industry or research partnerships.

Resource Competition & “Growing the Pie”

Divided efforts confuse funders and limit community engagement.
Merging or aligning efforts can increase clarity and participation, ultimately expanding fundraising opportunities and reach.

Actionable Takeaways:

Listen first. Tap into community needs before making strategic decisions.
Pilot partnerships. Collaborate on a small project first to build trust.
Clarify goals. Ensure everyone is aligned on mission and long-term vision.
Be transparent. Communicate openly, especially when discussing challenges.
Create safe spaces. Consider leadership councils or codes of kindness to foster mutual respect among multiple organizations.
Step back when needed. Evaluate if leadership change or sharing power will better serve the community.

Next Steps:

Reflect on your organization’s current collaboration posture: Are you merging, parallel-working, or siloed?
Assess your leadership approach: Are you truly community-led? Are you experiencing founder or board fatigue?
Explore opportunities to co-host, co-fundraise, or align messaging with similar orgs in your disease space.
Consider establishing or joining a “leadership council” for shared learning and coordination.