February 27th marked a memorable and impactful day at the Westminster Parliament Reception for Rare Disease Day, which was graciously hosted by Genetic Alliance. It was an honour to be part of such a significant event, where individuals from across the rare disease space came together to share stories, raise awareness, and work towards positive […]
Category Archives: News
19
Feb
Feb
At PTENUKI, we believe that patients and carers should have a voice in shaping the future of healthcare. That’s why we are inviting you to join our Public and Patient Involvement and Engagement (PPIE) initiative—a unique opportunity to share your experiences and help improve PTEN healthcare services. Why Get Involved? Your insights and lived experiences […]
02
Feb
Feb
Date: Saturday, February 22, 2025 In celebration of Rare Disease Day, PTENUKI is excited to announce a virtual Brush Party on Saturday, February 22, at 3 PM. This online event invites individuals and families affected by PTEN to come together, express their creativity, and engage with others. Participants who register will be posted an art […]
27
Jan
Jan
Positively Rare is a groundbreaking collection that goes beyond the medical aspects of rare diseases. It’s a celebration of the human spirit, a testament to the strength, purpose, and love that can flourish even in life’s most challenging moments. As Rob Haselberg, a Huntington’s disease gene carrier and rare disease advocate, aptly puts it, “This […]
16
Jan
Jan
We are excited to announce our 6th PTEN Patient Day! This annual event brings together PTEN patients and families for a day of learning, connection, and support. Details are below. Save the Date Date: Sunday, 29th June 2025 Time: 10:00 AM – 4:00 PM Venue: Sense TouchBase Pears, Selly Oak, Birmingham Join us for an […]
20
Oct
Oct
We are thrilled to announce Pete Welch as the new Chairman of PTENUKI (PTEN UK & Ireland). With over 40 years of experience in finance, a strong commitment to his family, and a deep personal connection to the PTEN community, Pete is set to lead the charity with energy, compassion, and a clear vision for […]
22
Sep
Sep
We are excited to introduce you to the Pipgen Art Project, an extraordinary collaboration between science and art! Over the past five months, a cohort of ITN PhD students have worked alongside talented art students from the prestigious Cambridge School of Visual & Performing Arts, creating a unique collection of 15 science-inspired artworks. Each piece […]
18
Sep
Sep
As PTEN Awareness Day approaches next month (October 23rd), we are thrilled to announce our inaugural art and photo competition! This unique initiative invites individuals affected by PTEN—patients, caregivers, and advocates—to share their stories through the transformative power of art and photography. Why This Competition Matters PTEN awareness day helps raise awareness about PTEN to […]
26
Jan
Jan
CALLING ALL FAMILIES TOUCHED BY PTEN IN THE UK AND IRELAND! This is for you! The PTEN UK and Ireland Patient Group are proud to announce the launch of our Cost of Living Grant. This grant aims to help support families in the UK and Ireland who need a bit of extra help during these […]
02
Jul
Jul
On Saturday 24th June 2023 we held our 6th PTEN Patient Day in Oxfordshire, kindly hosted by the HealthScience communications consultancy Oxford PharmaGenesis. It was a beautiful sunny day so we were able to enjoy children’s entertainment and a BBQ in the beautiful walled garden. Whilst the children enjoyed the entertainment by Captain Fantastic we were able to give […]
23
May
May
We are very excited that our 2023 PTEN Patient and family Day is just around the corner. Everyone is welcome! Date: 24th June 2023 Time: 10:30am – 3:30pm Venue: Tubney Warren Barn, Oxford, PharmaGenesis, Tubney, OX13 5QJ The day promises to be full of fun with children’s entertainment from Captain Fantastic! . We also have a delicious summer BBQ from All Events. […]
05
May
May
We want to say a HUGE thank you to our six runners who took part in the London Landmarks half marathon on April 2 nd 2023. Katherine, Emma, George, Richard, Hannah and Robert raised over £6,500 between them for our PTEN community. The sun was shining and a great day was had by all! The […]
05
May
May
EXCITING NEWS!!! In the PTEN community we all understand the impact that living with a PTEN mutation can sometimes have, both physically and mentally. Therefore, PTENUKI are pleased to launch the *PTENUKI Wellbeing clinics* in collaboration with Rareminds. These wellbeing clinics will be monthly, online sessions available to all patients, parents, carers and family members […]
24
Apr
Apr
This research seeks to test online questionnaires and measure of thinking skills relevant to people with PTEN Syndrome. You can find out more in April’s PTEN Power Hour here.
12
Mar
Mar
We are delighted to announce our new Chair of trustees, Jack Donnelly. Jack is from Coventry and approached the charity at the beginning of 2023 after his daughter Amara was diagnosed with the PTEN gene mutation at the age of 2. Jack felt strongly that after learning of Amara’s diagnosis it became apparent that there was a lack of […]
19
Jan
Jan
We hope you had a wonderful festive break! The new year is now in full swing so we wanted to start the year by announcing our hopes and dreams for 2023! We took everything on board that was discussed at our last patient day and have a vision for 2023 to help our community even further. […]
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. […]
08
Jun
Jun
Would you like to use your skills and expertise to make a difference? This is an exciting opportunity to join a passionate board of trustees who are committed to the cause and want to help change peoples’ lives for the better. Our main aim is to improve the lives of patients, parents and care givers [...]
21
Oct
Oct
PTENUKI are excited to announce the appointment of Kelly Kearley as the new Charity Manager. The charity was originally set up in 2017 by a group of parents and individuals personally affected by a PTEN gene change, with the intention of helping to support each other and other families within this small community. PTEN is a […]
02
Sep
Sep
On behalf of the charity I am delighted to attach to our Summer Newsletter with details of all our updates as well as a link to sign up to our next patient day. – Ellie Download: PTENUKI Newsletter August 2019 View:
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