Mission
Empowering rare disease communities through compassionate support,
accessible research and education, and an interdisciplinary network—
ensuring no one navigates their rare journey alone.
Vision
We dream of a rare disease community where no one feels alone.
From families navigating a diagnosis to the students and researchers learning about them, caregivers and physicians to tireless advocates—we believe every voice and every story matters. Through heartfelt connection, inclusive education, support and accessible research, the Rare Disease Network is here to connect, empower, and bring hope to every corner of our rare community.
Core Values
Empowerment
Empowering rare disease communities through compassionate support,
accessible research and education, and an interdisciplinary network—
ensuring no one navigates their rare journey alone.
This value emphasizes: Patient-Centered Leadership, Education and Advocacy, Community Strength, Resilience and Hope.
compassion
Recognizing the profound challenges faced by anyone affected by a rare disease (patients, caregivers, advocates) and leading with empathy, understanding and unwavering support.
This value emphasizes: Amplifying the Patient Voice, Promoting Accessibility and Patient-Centered Care, Providing Emotional and Practical Support.
community
Building a network of mutual support, where strength, connection, and shared experiences unite all rare disease stakeholders.
This value emphasizes: Shared Experiences and Understanding, Inclusivity and Belonging, and Strength through Unity.
collaboration
Working together across disciplines, communities, and backgrounds to drive innovation and research, amplify impact, and accelerate progress.
This value emphasizes: Fostering Connections, Cross-Sector Partnerships, Patient-Led Initiatives, and Knowledge and Resource Sharing.
Our Amazing Team
Rare Disease Network is led by a multidisciplinary team of parents, clinicians, researchers, educators, and advocates united by a shared commitment to improving the lives of families navigating rare conditions. Our Board of Directors brings together lived experience and professional expertise through the leadership of Shannon Bennett, Dr. Caleb Bupp, Dr. Amy Wilstermann, and Laura Holman. They are supported by an exceptional Event Planning Team that includes genetic counselors, clinical research leaders, pediatric and psychiatric specialists, and internationally recognized scientists from Corewell Health, Michigan State University, and the Van Andel Institute. Together, this collaborative group blends compassion, scientific rigor, and community‑centered vision to create meaningful programming, advance awareness, and strengthen the rare disease ecosystem.