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Patients area

The UDNI together with the Wilhelm Foundation will offer undiagnosed patients (adults and children), who have been evaluated at an UDP and still are undiagnosed to share your story.

This is a tiny opportunity to a diagnosis. But if you still are undiagnosed donít hesitate to take this chance to show all the visitors your medical history and photos. Many of the specialists who visit the UDNIís website work all day long to solve the undiagnosed diseases and perhaps one of them find your childís story like one of the doctorís patient. If so, he will become interested and will contact you or your doctor at the UDP. We canít promise anything, but this is a new chance to a diagnosis.

This area is under the Wilhelm Foundation responsibility. In this section Wilhelm Foundation will collect some information (phenotypic, genotypic, picture) from undiagnosed rare patients.
For this purpose a dedicated ethics-Informed Assent as well as a UDNI Parental Consent were developed and apporved during the 6th Conference of Undiagnosed Diseases Network International (19-21 June 2018, Naples) by all UDNI Board Members and participants. Before adding information on a patient these consents have to be download and signed by the Responsibles of patient.

Patients must have undergone a specific visit in a dedicated undiagnosed clinical site before being added in the present section.

  • Participant 106

    Participant 106

    He was born in 2011 and at first he seemed healthy. But after 1.5 days he suddenly became unconscious and very ill. His sodium levels were not normal.

  • Participant 105

    Participant 105

    She was born 2011 with small cerebellum and pons. Delayed motor- and cognitive development, weak muscle tone and ataxia.

  • Participant 104

    Participant 104

    9 year old boy with intractable epilepsy. He can not walk, crawl, speak. He does have different sounds and has involuntary movements of the hands. He have his hands in his mouth a lot.

  • Participant 101

    Participant 101

    Born w 35. Small for gestational age. Neonatal low glucose. Degeneration of brain white matter during the first months, stable since ~6 months of age. Metabolic disease has been suspected since birth

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