Wilhelm Foundation is working intensively to spread awareness of the undiagnosed diseases and that they should belong to the group of rare conditions. Part of the work is to attend various conferences and meetings around the world, which also leads to a large network of important people, organizations and companies.
United Nations Headquarters in New York
Deciding which meeting has been most important to the Wilhelm Foundation in addition to the World Congresses is impossible to say, but it goes without saying that the undiagnosed at the NGO Committee for Rare Meeting Diseases on February 19, 2019 at the UN headquarters in New York was great for the Wille Fund. It also made invaluable contacts.
Meeting in Australia
Another meeting that has meant a lot to the Undiagnosed was when Mikk and Helene were invited by Professor Gareth Baynam in 2015 to Perth, Western Australia as A VIP. VIP guests were also Dr. Gahl and Steve Groft both from the NIH (National Institutes of Health) USA.
It was a very well organised workshop with 80 participants from different hospitals in Australia, some Australian patient organisations, senior politicians and the US ambassador to Australia. Why the meeting took place and why we were there was to try to convey to the participants why it was important that an Undiagnosed Diseases Program UDP was formed in Western Australia. The meeting led Professor Gareth Baynam to start the first UDP in Australia.
Meeting at the Vatican
The evening after the First World Congress took place in Rome, Helene and Mikk Cederroth were invited to the Vatican to meet with the Pope's medical adviser and priest Padre Andre, for a possible meeting with the Pope at a later date. It was an incredibly big day for the Wilhelm Foundation and since that day Helene and Mikk have made a new friend, Padre Andre and met him a number of times since then.
Many interesting meetings and conferences
Wilhelm Foundation has also participated in many national and international conferences and meetings on Rare Diseases, to which the undiagnosed diseases belong. But due to lack of diagnosis, the undiagnosed often come outside, which willefonden works intensively to prevent.