Undiagnosed Diseases Network International

Diagnostics

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 Seventh International Conferences on 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 2020 January-February in Niemegen Netherlands.

The last Conference was held in New Delhi, India in April 2019, and was a collaboration between Dr. Gahl and Professor Puri New Delhi 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, sixth in Napoli, Italy June 2018 ane last conference in New Delhi India 2019.

They are held in various locations in order to spread knowledge about undiagnosed diseases in different regions, and 200 Indian specialists participated in the Indian Conference 2019.

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?

The Wilhelm Foundation and the American famous photographer Rick Guidotti Positive Exposure work together in a new global photo project - the Undiagnosed.

The project has several aspects, partly highlighting the beauty and diversity of the undiagnosed children! We also want to highlight that everyone can suffer from an undiagnosed illness regardless of where in the world you live. An important task is also to disseminate information about the undiagnosed children and the undiagnosed diseases. Many do not know that there are diseases that are not detected by medical science. Undiagnosed Diseases Program (UDP), Undiagnosed Diseases Network International UDNI and our World Congresses are also very important to disseminate to doctors, researchers but also to the public!

At the same time, we hope that it can lead to some of the participating children being diagnosed because we will have a photo exhibition at each world congress, where we also describe the children's medical history in a booklet that is distributed to all specialists.

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

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The beauty and diversity
of the Undiagnosed patients!

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The 8th International Conference on Undiagnosed Diseases will take place in Niemegen Netherlands January-February 2020