Undiagnosed
diseases

Children with Undiagnosed Diseases
Undiagnosed Diseases Network International UDNI

Now is the time to try again

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

Wilhelm Foundation has up to this day organized four International Congresses for undiagnosed diseases in collaboration with Dr. Gahl who work at the NIH in USA.

The fifth International Congress will take place in Stockholm, Sweden in 30-31 August this year.
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 and the fourth in Tokyo, Japan 2016 in November.

 Worldcongress for Undiagnosed Diseases
Specialists from all over the world are invited to the World congresses. The congresses are held on different locations each time so the undiagnosed diseases can reach every region.

International Network formed


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

The UDNInternational consists of the American Undiagnosed Diseases Network (UDN) and the newly-formed 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.

A lot is happening at the moment for children with undiagnosed diseases!

Even if your child has undergone genetic testing a few years ago and no diagnosis could be determined, now is the time to try again. A lot has happened thanks to gene sequencing. Most progress is has been made on children with mild intellectual or developmental disabilities, but it is worth trying for all children without diagnoses!

Even if doctors haven’t been able to diagnose your child, doesn’t mean it’s hopeless!

Dr. Gahl (NIH), one of the most prominent diagnosticians in the USA, and he demands that everything that can be tested is tested!

It isn’t easy finding your way! We have tried to put together a list which we will add to as we go along.
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, 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!

Applying for the Silver Lining

Wilhelm Foundation’s webshop

Show that you support Wilhelm Foundation! We need your support.

Being diagnosed at long last!

Tore is one of Wilhelm Foundation’s children who we have written about before on our website. Tore has gone undiagnosed for many years and now he has finally received one: he has GRIN2B!

Tore’s mother Jenny Larshans tells of all the positive things a diagnosis has brought the family, even though there are only about 40 patients in the world with the same diagnosis as Tore! If you doubt whether a diagnosis will benefit your situation or not you have to read Jenny’s story!
Rare Disease Day
In the foundation’s shop you can buy seven different kinds of bracelets for €5.40 ($5.80, £3.90) each, among other things
Mikk and Helene Cederroth are the founders of Wilhelm Foundation and have been named one of the Swedish newspaper Aftonbladet’s Swedish Heroes!

Wilhelm Foundation’s pearl bracelets!

€5.40 ($5.80, £3.90)

Rundis, thank you for helping us
Donate now!
RareConnect Community for Undiagnosed Diseases

Global 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
Thank you!
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.
Thank you, Symaskinsgrottan, for the wonderful embroidered shirt with Wilhelm Foundation’s logo on it for Göteborgsvarvet!!
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
A big thank you to Fars Hatt for your support during Wilhelm Foundation’s parent weekend. It was a success!
Tusen tack för ert stöd till Willefonden
Tusen tack för ert stöd till Willefonden
Thank you for supporting Wilhelm Foundation and helping us sell bracelets and handing out brochures
Thank you for supporting Wilhelm Foundation and helping us sell bracelets and handing out brochures
Tusen tack för ert stöd till Willefonden
Tusen tack för ert stöd till Willefonden
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
A sincere thank you to Christine Björner for the lovely poster and brochure for the DIA conference
Thank you Hestravikens Inn!
Lions Djursholm, thank you for all the help!
Thank you!
Thank you Kolmården for making a dream come true by letting Love pet the dolphin!
Thank you!
VVing is sponsoring Wilhelm Foundation! Thank you so much, it means the world to the foundation’s children!
LanLink, thank you for your support!
Thank you Lssbloggen!
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. Wilhelm Foundation will send a memorial letter to the family.

A memorial letter
Member of Rare Voices Australia
Wilhelm Foundation is a member of Rare Diseases Sweden
The fifth World congress will take place in Stockholm, Sweden in 30-31 August 2017