The Undiagnosed Diseases Network (UDN) is working to help patients with rare undiagnosed conditions find answers. So far, they have helped more than two hundred patients achieve a diagnosis.
About the Undiagnosed Diseases Network
The UDN is a research study designed to support patients who, despite a lot of evaluation, aren’t able to reach a diagnosis. The UDN connects them to scientists and doctors, who use the latest research, genetics, and an awareness of rare diseases to try to find the cause of their symptoms. In addition to helping patients and their families, the UDN also hopes this study will be an opportunity to learn more about diseases. So far, over 2,700 people have applied to the program, and more than 1,100 have been accepted.
How it Works
People who are accepted to the study are generally referred to their closest UDN centre, where they will probably be asked to stay for a few days. The doctors may suggest further tests, such as x-rays, CT scans, blood tests (for genetic analysis), and lab tests. Sometimes, other family members are also asked for blood samples for genetic testing. There are also likely to be forms and surveys to fill out, to help the doctors understand the patient’s case. This process varies depending on the needs of each participant, but you can find out more about how it generally works here.
Connecting with Other Patients
In addition to their symptoms, many people without diagnoses have to deal with a lack of information about their condition, which can lead to a sense of isolation. To help patients connect to each other, the UDN has set up three websites. ‘Participant Pages’ are about some of the patients taking part in the study, and were created in the hopes that other similar patients could find them. MyGene2 profiles allow people to search for people using genetic findings, while UDN participants use the third resource, PEER, to share and improve the process.