Degos Carers and Supporters
As Degos disease is an extremely rare disease, we welcome input from those affected by it. We also welcome donations to help with the running of the Support Network and to assist the research into the disease.
Full details of the research can be found in the Information for Patients and Relatives (PDF) document.
First, patients are asked to send copies of their medical records to Professor Zouboulis, together with all blood test and biopsy results and findings, and a copy of the Declaration of Consent Form (PDF) to say that you’re happy for your data to be used.
Then, with the help of their doctor, patients and their closest relatives (brothers, sisters, parents, children) each send a small samples of blood and skin tissue to the professor, for their DNA to be stored for analysis and comparison. (A family tree, or pedigree needs to be included along with the named samples, so that the researchers can identify whose blood is whose!)
Finally, patients are asked to complete a simple questionnaire, so that some basic information can be gathered.
It is so important for as much information as possible to be collected. We are such a select few (less than fifty in the world so far) – every little scrap of knowledge adds to the sum total of understanding.