Wilhelm Foundation
Undiagnosed Diseases Network International


Not having a diagnosis means that no one knows what medications will help or even make the condition worse, since no one knows what is wrong with the child. But getting a diagnosis can open the door to other options, such as Orphan Drugs. These medications can hopefully keep the child alive, or even better, make them healthy!

In order to determine whether the disease or hereditary or not, a diagnosis is needed. There are no pre- or postnatal tests to determine if the child will develop an undiagnosed brain disease, since no one knows what to look for – that is why a diagnosis is so important. It is also important for the extended family to know if they are carriers of a severe disease, and so when a diagnosis is determined they are often called in for counseling!

The International Congresses

The Wilhelm Foundation has arranged five International Congresses of Undiagnosed Diseases, in collaboration with Dr. Gahl from the National Institutes of Health (NIH) in the United States. The next world conference regarding undiagnosed diseases will take place
in Naples, Italy in June 2018.

The last Congress was held in Nobel Forum, Stockholm in August 2017, and was a collaboration between Dr. Gahl and Professors Nordgren and Wedell of Karolinska Institutet in Stockholm and Wilhelm Foundation.
The first World congress was held 2014 in Rome, Italy and the second 2015 in Budapest, Hungary. The third congress was held in Vienna, Austria 2016, in February, the fourth in Tokyo, Japan 2016 in November and the fifth in Stockholm 2017.

 Worldcongress for Undiagnosed Diseases
They are held in various locations in order to spread knowledge about undiagnosed diseases in different regions, and several Scandinavian specialists participated in the Swedish congress

Undiagnosed Diseases Network

An international network for undiagnosed diseases, Undiagnosed Diseases Network International (UDNInternational), was formed at the first and second International congress for undiagnosed diseases.

The network is called Undiagnosed Diseases Network International (UDNI). Specialists give the Wilhelm Foundation credit for the forming of this network, something that we take great pride in.

The UDNInternational consists of the American Undiagnosed Diseases Network (UDN) and the international network for undiagnosed diseases, Undiagnosed Diseases Network International www.UDNInternational.org, which makes it worldwide.

Why is a diagnosis important?

Undiagnosed diseases are often divided into two groups; stationary and degenerative. Wilhelm Foundation works for both!

Characteristic for a brain disease is that children have many different and severe symptoms. The disease can affect many systems in the body. Read more about the various symptoms.

Sometimes parents question whether their child belongs to Wilhelm Foundation or not since they are not sure if their child has a disease. The reason we include the concept of “disease” is to distinguish between disease and injury (birth traumas such as cerebral palsy). If the symptoms check out, the child is undiagnosed and does not have an injury; Wilhelm Foundation will classify it as a disease.
The goal of the Wilhelm Foundation is that all children with undiagnosed diseases are diagnosed. We are pleased to report that much is happening when it comes to diagnostics, which can lead to more children receiving a diagnosis. We therefore recommend parents to demand a genetic investigation for their undiagnosed child. This also applies to children who have undergone genetic investigations earlier, without getting a diagnosis. It might be time for a new investigation since new diseases are discovered all the time, thanks to diagnostics by the help of genome sequencing.

Even if your child has just undergone a genetic investigation and still is undiagnosed there is hope! The Wilhelm Foundation's World Congresses have led to collaboration between specialists of the Undiagnosed Diseases Network International UDNI, and they do everything they can to solve the mysteries of diseases that no one else has been able to solve.

But they can also be an event! Like the boy who wanted to pet dolphins, which we tried to make happen, and succeeded!

Another well liked Silver Lining has been a special snow sledge. One child’s parents applied for a playhouse, including all the accessories that make it homey and cozy! A Nihola bike, which can bring along the wheelchair on a platform, was also much appreciated!

Our only requirement is that the child has an undiagnosed brain disease, and that this can be backed up by a doctor’s certificate!

Here you can find a link to the application form and some tips on other Silver Linings we have handed out!
Wilhelm Foundation’s Silver Lining is for children and adolescents with an undiagnosed brain disease in Sweden so far.

The parents decide what the Silver Lining should be, since they know best what will make their child happy.

Silver Linings can basically be anything and for Liv it was a puppy!

Applying for the Silver Lining

Wilhelm Foundation’s webshop

Show that you support Wilhelm Foundation! We need your support.
In the foundation’s shop you can buy seven different kinds of bracelets for €5.40 ($5.80, £3.90) each, among other things
Rare Disease Day 2018 poster out now!

Wilhelm Foundation’s pearl bracelets!

€5.40 ($5.80, £3.90)

Tack för sponsoring!
Donate now!
RareConnect Community for Undiagnosed Diseases
Would you like to become a volunteer? We need you!
Wilhelm Foundation is a member of the umbrella organization EURORDIS - Rare Diseases Europe
In Wilhelm Foundation’s webshop, http://shop.wilhelmfoundation.org/en/ , we sell cards, pearl bracelets with the text Wilhelm Foundation, cups and Calendars. We also have our own T-shirts, place mats and more! Every product is the foundation’s own.

In the shop you can also order collection boxes and brochures, in order to help us!

You can also donate a gift in our webshop.

A warm thank you to our business buddies:

A big thank you to G. Kinnvall AB, for being one of Wilhelm Foundation’s business buddies.
Thank you itsperfect ab for being our business buddy.

A warm thank you for sponsoring Wilhelm Foundation's world congress in Stockholm!

Stort tack Ellenius Bussar för all hjälp och fina service under världskongressen i Stockholm!
A big thank you to all the lovely employees, as well as the Rönn family, at Brottbyhallen! Your help and support means so much to Wilhelm Foundation!

Thank you to all of you supporting Wilhelm Foundation:

Wilhelm Foundation is a member of NORD!
Wilhelm Foundation is a member of ICORD
Thank you Textalk for sponsoring Wilhelm Foundation’s webshop
Stallmästaregården, varmt tack för er sponsoringen till Willefonden!
Tusen tack för ert stöd till Willefonden
Melanders Saluhall i Täby, tack för er generös sponsring!
Ballou, thank you for sponsoring the website!
Thank you SEB!
Pelle Sundqvist, a sincere thank you for everything that you do for Wilhelm Foundation
Thank you for all the lovely advertising spaces!
Thank you Komikapp for sponsoring Wilhelm Foundation’s Silver Lining
Stort varmt tack för att för att ni sponsrarar Willefonden och de odiagnostiserade barnen!
Tusen tack Ica Supermarket i Sölvesborg för att ni stödjer Willefonden!
Thank you Kolmården for making a dream come true by letting Love pet the dolphin!
Tack Matkonsult AB Anné Eklund Tornvillan för att ni är Willefondens företagsvän
VVing is sponsoring Wilhelm Foundation! Thank you so much, it means the world to the foundation’s children!
Tack för all hjälp under Willefondens världskongress!
TThank you Allduplo, for the support and lovely prints!
Xllnc, a big thank you for supporting Wilhelm Foundation!
Kontorsnetto, thank you for sponsoring Wilhelm Foundation’s newsletters

Many various symptoms

Thank you Edens bageri, Linköping, for selling the foundation’s bracelets!

Honor the memory of a loved one by donating a memorial gift.

A memorial letter
Member of Rare Voices Australia
Wilhelm Foundation is a member of Rare Diseases Sweden
The sixth International Congress on Rare and Undiagnosed Diseases will take place in Napoli, Italy i June 2018