Mikk and Helene Cederroth, founders of Wilhelm Foundation

Helene and Mikk Cederroth are the founders and driving force behind the Wilhelm Foundation, a global voice dedicated to ending the diagnostic odyssey for people living with undiagnosed diseases (PLWUD).

Our Story and Why We Lead

Helene and Mikk's journey into undiagnosed disease advocacy is deeply personal. After losing three of their four children, Wilhelm, Emma, and Hugo to an undiagnosed disease that was neither recognized as hereditary nor believed to be fatal, Helene and Mikk committed their life to ensuring that no other family has to endure the same pain, uncertainty, and lack of answers. Their lived experience, combined with a relentless pursuit of change, continues to shape the mission, values, and impact of the Wilhelm Foundation.

Together, they combine lived experience with leadership, bringing compassion, clarity, and long-term perspective to global undiagnosed disease initiatives. Their shared commitment ensures that families remain at the center of research, collaboration, and policy development.

Global Leadership and Impact

Under Helene and Mikk’s leadership, the Wilhelm Foundation has become internationally recognized for advancing collaboration and innovation in the undiagnosed disease field. The Foundation plays a key role in connecting clinicians, researchers, policymakers, and families to accelerate diagnosis and improve care pathways for people living without answers.

They have co-founded and stewarded international initiatives, including the Undiagnosed Diseases Network International (UDNI) and the Global Undiagnosed Hackathons, creating platforms where multidisciplinary teams work together to address the most complex diagnostic challenges. Through strategic engagement with research consortia, clinical networks, and policy frameworks, they contribute to systems-level change and help shape the future of undiagnosed disease research and care.

A strong focus on inclusion and equity underpins all their work, ensuring that families in low- and middle-income countries have access to the same opportunities for diagnosis and care as those in high-income settings.

Vision and Commitment

Helene and Mikk’s work is driven by a simple but powerful belief: every person living with an undiagnosed disease deserves answers, support, and dignity. They envision a future where the diagnostic odyssey does not end in uncertainty, but in timely answers and coordinated care, supported by global collaboration and shared responsibility.

Through convening, partnership, and compassionate leadership, they continue to guide the Wilhelm Foundation toward lasting impact, amplifying family voices, strengthening international cooperation, and advancing science and solutions so that no one is left without answers.