rare connect
Honoring the ECDGA Board of Directors: Volunteers in Leadership
Behind every thriving organization is a team of dedicated individuals who believe in its mission so deeply that they lead not for recognition or reward—but because they care. At the Erdheim-Chester Disease Global Alliance (ECDGA), this team is our Board of Directors, a remarkable group of volunteers who give their time, talents, and hearts to support individuals and families affected by Erdheim-Chester Disease (ECD).
As we continue celebrating Volunteer Month this April, we’re proud to spotlight these tireless leaders who help steer ECDGA forward, uphold our values, and strengthen our mission to support awareness, education, and research around this ultra-rare disease.
Who Are the ECDGA Board of Directors?
The ECDGA Board is made up of a diverse group of individuals—patients, caregivers, advocates, and professionals—who have stepped up to serve as the organizational backbone of the alliance. They are volunteers in the truest sense: offering strategic guidance, vision, and oversight while championing the voices of the global ECD community.
These individuals meet regularly, collaborate across time zones, and work closely with staff and partners to ensure that our programs are impactful, our mission remains clear, and our future stays bright.
You can view the full list of board members here:
🔗 www.erdheim-chester.org/boardstaff
Leading by Example
What sets the ECDGA Board apart is that leadership here is deeply personal. Many board members have direct experiences with ECD—either through their own diagnosis or a loved one’s journey. They bring a level of empathy, commitment, and urgency that can’t be manufactured. Their leadership is not from a distance; it’s woven into the fabric of the community they serve.
They are behind major decisions that affect every part of ECDGA’s work—from expanding global outreach efforts to improving the patient registry to organizing our two cornerstone events: the Annual Patient and Family Gatheringand the Medical Symposium.
And with this year’s 2025 conference in Barcelona fast approaching, their work takes on even greater visibility and impact. Board members are actively involved in shaping the agenda, coordinating logistics, and creating the welcoming, inclusive space ECDGA gatherings are known for.
Stewarding the Future of ECDGA
The journey of those impacted by ECD is often marked by uncertainty. Our Board of Directors helps bring clarity to that path—not just for patients and families today, but for future generations. Their work strengthens our ability to fund and support research, elevate patient voices, and build partnerships across the global medical community.
From policy to fundraising, mentorship to innovation, our board serves as guardians of ECDGA’s mission and stewards of its future.
These leaders ensure that every dollar raised, every program launched, and every connection made brings us closer to a world where ECD is not only more understood—but more manageable, and someday, perhaps curable.
Gratitude in Action
Leadership is often a quiet kind of volunteerism—behind-the-scenes, strategic, and relentless. That’s why Volunteer Month is the perfect time to say: thank you.
To our Board of Directors: your vision, wisdom, and dedication fuel everything we do. Your volunteerism inspires others to give, to lead, and to believe that even the rarest conditions can be met with the strongest of communities.
As we prepare to gather in Barcelona this May, your impact is more visible than ever. It’s in every name on a registration form, every new face logging into a chat, every researcher preparing a presentation. It’s in the lives touched, the hope shared, and the unwavering belief that together, we are stronger.
The Erdheim-Chester Disease Global Alliance (ECDGA) does not provide medical advice, diagnoses, or treatments. All content is for informational purposes only. Please consult with a healthcare provider for medical concerns.
