by Margaret | 12 Sep 2019 | Surveillance
Diagnosis is vital for subsequent surveillance for complications such as basal cell carcinomas (BCCs) and jaw cysts, and for giving genetic information. Individuals with Gorlin syndrome should be offered regular screening, ideally with one clinician or genetic...
by Margaret | 20 Aug 2019 | Research and Surveys
Courtesy of Camilla Krogh Lauritzen, Chief Patient Officer, Rare Diseases, LEO Pharma At LEO Pharma, we know that people living with rare diseases are experts in their own right: They are indeed disease experience experts. We also appreciate the relevance for us to...
by Margaret | 30 Jul 2019 | Research and Surveys
The EU website for the Pelle-926-301 study is now live. You can see it at www.global.gorlinstudy.com Study sites in France, Spain and Germany are now active. Clicking on the respective flag will launch the content in that language. It is anticipated that other sites...
by Margaret | 5 Jul 2019 | Research and Surveys
An on-line survey ran from 29/7/18 to 4/7/18. Participants could volunteer if they were 18 or over and had Gorlin syndrome. We asked participants to respond for themselves. There were 39 responses, including one form an individual who said she was not diagnosed with...
by Margaret | 17 Jun 2019 | Research and Surveys
Germline Genome Editing (Genetic Editing) is a technique through which parts of DNA in an egg, sperm or embryo can be added, removed or replaced. It can be used to prevent hereditary diseases by ensuring DNA sequences known to cause specific conditions are not passed...
