Local Meet Ups

An objective very close to the heart of PTENUKI is to be able to reach out and be available as a source of information and support to patients, parents and carers of all ages, who are affected by PTEN genetic alterations.

As part of this, the group holds annual patient days in November in central London.We have had three very successful, well attended meetings so far. Some of the feedback we have received, is that quite clearly London isn’t convenient for everyone.Further feedback also suggests that more regular contact, at a local level would be beneficial.

As a result we have established four regional groups (so far) –
These are:

Ireland – Contact: Sinead O’Hare – sinead@ptenuki.org
South and West England – Contact:Zoe Read – zoe@ptenuki.org
North West England – Contact: Sarah Plummer – sarah@ptenuki.org
Scotland – Contact: Yvonne Esslemont- yvonne@ptenuki.org

Read about our South West Support Group’s inaugural meet up in September 2019!

On the 7th September 2019, 20 people from as far and wide asNorthampton, Portsmouth, Fareham, Gosport, Southampton, and Bournemouth met in Southampton.They were treated to home made cakes, refreshments and the hospitality of Zoe and Connor.There was lots of lively discussion, and sharing of ideas and feedback.The overall consensus was to try and have two meetings a year, as practical, local level support and expertise clearly enjoyed and needed.Future topics that people wanted to talk about were Genetic IVF, teeth and dental care, and creating a questionnaire of symptoms.Congratulations to our regional rep Zoe for making this happen.

If you are interested in taking part or finding out more then please contact the local representative above for details of local meet-ups in your area.

If you have any questions about the scheme or if you’re interested in running your own local meet-up group, then please contact Colette Knight on colette@ptenuki.org.