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1. EB genetics -We just want to let you know that Russell Gear (clinical genetics doctor in Wellington), might give you a phone call soon to follow up on the emails he sent out to DEBRA NZ members in the last few weeks. He’s carrying out a study to find out how people in New Zealand are affected by EB, including what type of EB they have. If you want to know more about this, contact Russell Gear or Diana Purvis (details below).

We’re hoping to have responses from as many of you as possible so the study can be a valuable resource, to put us all in a stronger position to advocate for, and support, the EB community in New Zealand. Thanks for your help with this!

2. Growing EB skin in the lab –the first samples have been collected and the cells are already growing well. This study is a first step to future gene editing and creating skin that can be used to graft over wounds for people with EB that won’t blister.

Dr Diana Purvis, Paediatrician and Dermatologist, is happy to speak to anyone with EB who might be interested in participating in this initial stage by providing a small skin biopsy.

Read more about this exciting skin engineering research: This is a collaborative project involving Dr. Diana Purvis, Dermatologist at Starship Hospital, Auckland, Dr. Hilary Sheppard, a molecular biologist from the University of Auckland and Dr. Vaughan Feisst, a skin engineer from the University of Auckland. You may have heard Prof. Rod Dunbar and Dr. Vaughan Feisst talk at previous DEBRA conferences about their work on growing sheets of skin for burns patients. We now want to see if we can develop methods which would allow us to grow patient-specific sheets of skin for people with fragile skin conditions like Epidermolysis Bullosa. To do this we are looking for people with EB, who live in NZ, who would be willing to donate some small samples of skin. We would take your skin with the aim to repair the genetic changes in your skin cells, and then use the repaired cells to make gene-corrected sheets of skin in the laboratory. If you agree to help with the study, there will be no immediate benefit to you, as this is not a treatment-based study. The information obtained will be preliminary but it will contribute to an overall understanding of how we can treat skin which is affected by a genetic disorder, which may help in the design of new treatments in the future.

The research team is interested in working with people with any type of EB or level of severity. If you would like to learn more about this project and how you could be involved please contact the lead dermatologist, Dr. Diana Purvis (contact details below). She can answer your questions and send you a patient information sheet.

Dr. Hilary Sheppard Lead Researcher 09 923 1194

Dr. Diana Purvis Lead Dermatologist 021 938285

Dr. Russell Gear Genetic Health Service NZ

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