One of our main aims as a patient group is to provide support to our PTEN community across the UK and Ireland in any way that we can, be it with in person patient days, information on our website or contact with professionals. As part of this aim, at the beginning of the year, we […]
Category Archives: Blog
17
Nov
Nov
In September our trustees Ellie and Priyanka had the opportunity to represent PTEN-UKI at ‘The PI3K-AKT-mTOR-PTEN pathway: a new era in basic research and clinical translation’ conference in Barcelona which focussed on cell signalling pathway that PTEN is a part of. The conference was attended by researchers, clinicians and people from pharmaceutical companies. The event […]
22
Aug
Aug
Summary of the day For the first time since 2019, over 100 people in the PTENUKI community joined together in person for a day of learning, sharing experiences and building relationships as part of PTENUKI Patient Day 2022. The day was held in the Oxfordshire countryside and hosted by the HealthScience communications consultancy Oxford PharmaGenesis. […]
To mark Children’s Mental Health Week we are sharing the work of Dr Alice Welham and team from the University of Leicester on the behavioural and psychological effects of PTEN in children Watch the video to find out more and email: kc274@leicester.ac.uk if you would like to take part in the study. https://youtu.be/imPCKyYEKKw
08
Jul
Jul
The South West region support group is proud to announce it’s first “meet and greet/ planning” session. When? SATURDAY 7th SEPTEMBER 2019 Time? Between 11am – 2pm Where? St Marks Church (upstairs lounge), Archers Road , Southampton, SO15 2LU – a 12 min walk from the main train station. Please RSVP to zoe@ptenuki.org asap to let […]
14
Jan
Jan
At our Patient Day on 24th Nov 2018, Yvonne kindly told her inspiring and insightful PTEN story… Hello everyone, it’s a pleasure to be here today and to share our patient story within you all. My name is Yvonne and if you can’t tell already from the strange accent, I’ve travelled down from Glasgow in […]
06
Jan
Jan
Changing the Narrative in Person-Centred Health and Social Care I wear many, many hats in my day to day life. I work full time as well as writing, advocating, raising awareness for rare genetic conditions, with a side of inclusion activism thrown in for good measure. I’m also a bit of a social media addict. […]
20
Dec
Dec
It is said over 3.5million people in the UK have over 7,000 rare diseases, 85% do not have a treatment for their condition. The Cambridge Rare Disease Network works to build a community to address the unmet needs of these people living with rare conditions. This month saw their Annual Rare Fest, which is a […]
21
Sep
Sep
If I think back to my diagnosis 5 years ago when I was told I have a significant risk of breast, thyroid, uterus, kidney and skin cancer, to now when I live a ‘normal’, happy, fulfilled life where I embrace my Cowden’s diagnosis with a positive, lucky outlook, it makes me realise life really can […]
16
Aug
Aug
Sarah shares her experience When and how did you first get diagnosed? I was first diagnosed because of my niece. When she was born, they noticed she had a big head so they did some tests, which led to my sister being told that she had cowden syndrome. Both my sister and her boyfriend were tested […]
02
Aug
Aug
Michelle and Lexy share their story and hopes for the future…
13
Jul
Jul
Our Trustee of Fundraising Kelly tells us about her recent trip to the US to represent PTENUKI at the PTEN Hamartoma Tumor Syndrome Foundation symposium I had the honour of representing PTENUKI at the first international symposium held in Alabama in March 2018. As a parent of a PTEN patient as well as a founding […]
13
Jul
Jul
David told us his story as a PTEN/PHTS patient from childhood, through diagnosis, to now…
08
Feb
Feb
The third national PTEN / PHTS patient day held on 11th November 2017 was attended by over 80 people. Once again Salesforce kindly provided the venue and staff to host the day at Heron Tower in London, providing a fantastic opportunity for people to make new friends, learn more about PHTS, and take part in […]