Around 350 million people worldwide live with an undiagnosed disease. This presents enormous public health challenges and imposes a substantial burden on patients, families and healthcare professionals. Despite advances in medicine, an alarming 60% of people with an undiagnosed disease remain without answers even after exhaustive investigations, including whole genome testing.
This gruelling diagnostic odyssey can drag on for decades, leading to severe and devastating health issues, along with crushing emotional, financial, and social burdens.
The Wilhelm Foundation is an international organisation working to impact the undiagnosed rare disease space by bringing together international communities of researchers and patients to raise awareness of undiagnosed diseases, tackle research challenges, promote collaboration and sharing of information, and ultimately find answers for patients and their families.
Underpinning the Foundation’s work is Helene and Mikk Cederroth’s personal story (the couple lost three children to undiagnosed disease) and their unwavering commitment to creating a supportive ecosystem that leaves no one behind.
Despite being very small, the Wilhelm Foundation has achieved impressive success to date, and it continues to grow its programs, including:
Undiagnosed Hackathon
Hugo’s Fellows
Undiagnosed Diseases Network International
Undiagnosed Disease Day
Emma’s Playground
In 2024, they worked with Raquel to develop a 3-year strategy that supports the scaling of the growth and impact of their organisation. Raquel also supported Wilhelm’s leadership in the areas of visibility & awareness, prioritisation of tasks, succession planning, fundraising and recruitment. Since then, the Wilhelm Foundation was the recipient of international awards, it launched an Advisory Council/ Operating Committee and it’s plowing ahead with its innovative approaches to addressing real-world challenges for the undiagnosed.
You can access Wilhelm Foundation’s Strategic Plan here.