"The Undiagnosed"

We, Helene and Mikk Cederroth, funded and are running Wilhelm Foundation with the goal to help the specialists to solve the unsolved undiagnosed diseases thru arranging world congresses on undiagnosed diseases for the specialists.

We are parents to four children. Our three youngest children (Wilhelm, Hugo and Emma) suffered from an undiagnosed brain disease. Since they were undiagnosed we tried to find an explanation all over the world, but nobody could tell us what our children were suffering from. In three years our three youngest children past away. Wilhelm died at age 16, Emma died at age six and Hugo died at age ten.

As parents of three undiagnosed children we struggled with the same problems other families around the world often encounter. When your child is undiagnosed nobody knows what the disease is and therefor there is no medications, no prognosis and no tests to see if the disease is a genetic disease. It’s even difficult to be believed and to get some help from the society.

When we looked for a diagnosis for our beloved children, we saw that the lack of collaboration between all the places involved in diagnosis was obvious. We figured out that if we arranged a world congress maybe the specialists would start to collaborate. We had to do something for all the undiagnosed children in the world.

When Wilhelm died we funded Wilhelm Foundation. The first years the foundation worked in Sweden to collect enough money for a world congress. 2013 it was time to go abroad. We contacted Dr Gahl at NIH USA and told him about our dream - a world congress.

From the beginning the Wilhelm Foundation aimed to help children and youths who suffer from undiagnosed brain diseases but now Wilhelm Foundation works for all the undiagnosed children all over the world. Some of the children are affected from birth and others have a degenerative disease. The goal is to get the specialists to solve all the Undiagnosed Diseases. The congresses aim to get the specialists to cooperate and solve the mysterious undiagnosed diseases.

Together with Dr Gahl and Dr Taruscio ISS in Italy the Wilhelm Foundation arranged the first world congress and today we have co-arranged five congresses together with Dr Gahl from NIH 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 now it’s up and running.

We are devoted to international initiatives aimed at supporting research for Undiagnosed rare diseases. We are deeply involved in UDNI activities and Helene is a member of the UDNI board.

For further information about the Wilhelm Foundation’s initiatives please visit the website: http://wilhelmfoundation.org

This year we are one of the recipients of the EURORDIS Black Pearl Awards 2018 and we will do our best to cherish it.

Helene and Mikk Cederroth