President of Wilhelm Foundation and board member of Undiagnosed Diseases Network International. In 90s the vice president of Epilepsy organization in Stockholm and vice president of HSO in Stockholm (an umbrella organization for the 27 most common diseases).
Helene is devoted the Undiagnosed Diseases and especially to help children around the world with an Undiagnosed Disease to a diagnosis. She and her husband were parents of four children. In three years their three youngest children past away. They died in an age of 16, 10 and six years from an undiagnosed disease that no one thought was genetic or fatal.
Helene and her husband funded Wilhelm Foundation with the goal that the specialists would collaborate to solve the unsolved undiagnosed diseases. The first major goal was a world congress to try to get the specialists to cooperate and solve some of the mysterious undiagnosed diseases.
Together with Dr Gahl NIH and Dr Taruscio ISS the Wilhelm Foundation arranged the first world congress in Italy. Wilhelm Foundation have since then co-arranged four more congresses together with Dr Gahl and a local specialist in five different countries.
At the first and second international congress for undiagnosed diseases the Undiagnosed Diseases Network International was formed and is now a growing network. Helene and her husband has co-arranged five international congresses on rare and undiagnosed Diseases and arranged three training school for parents to undiagnosed children in Sweden. Helene gives presentations about the Undiagnosed Diseases and the patients, not only in Sweden but also abroad.
Helene and her husband is one of the recipients of the Black Pearl Awards 2018 The EURORDIS Volunteer Award.
Co-author of Undiagnosed Diseases Network International (UDNI) White paper for global actions to meet patient needs published in Molecular Genetics and Metabolism 116 (2015)
Co-author EURORDIS International Joint Recommendations To Address Specific Needs of Undiagnosed Rare Disease Patients (2016)