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.
Date and venue
Date: Sunday, 29th June 2025
Time: 10:00 AM – 4:00 PM
Venue: Sense TouchBase Pears, Selly Oak, Birmingham
Join us for an engaging and informative day designed for PTEN patients and their families!
Agenda
| 10:00 | Delegates arrive – tea and coffee served |
| 10:00 | Information zone and children activity areas open |
| 10:30 | Warm up activity (speed dating) |
| Conference Hall: | |
| 10:45 | Welcome address and charity update |
| 11:15 | PTEN Registry update |
| 11:30 | RECCE-PTEN research study overview with Dr Joe Christopher |
| 11:45 | PTEN Research Foundation update |
| 12:15 | Lunch in cafe |
| 13:15 | Delegates move to different breakout rooms |
| 13:30 | Sublime Science interactive table open for one hour |
| 13:30 | Breakout session 1 |
| 14:00 | Breakout session 2 |
| 14:30 | Breakout session 3 |
| 15:00 | Coffee break |
| Conference Hall: | |
| 15:15 | Patient story |
| 15:30 | Professional Q&A panel |
| 16:00 | Close |
Breakout sessions
|
Newly diagnosed / clinical genetics service
|
Dr Katherine Lachlan, Dr Angela Brady and Dr Marc Tischkowitz |
| Cancer surveillance guidelines for PTEN patients |
Dr Katherine Lachlan, Dr Angela Brady and Dr Marc Tischkowitz |
| PTEN registry update | Dr Katherine Lachlan, Dr Angela Brady and Dr Marc Tischkowitz |
| Dermatology and PHTS | Dr Schaida Schirwani |
|
Primary Immunodeficiency in PHTS
|
Dr Anita Chandra |
| EHCP guidance with Talking SENse | Led by Kelly Kearley |
|
Mental health support with Rareminds
|
Led by Kelly Kearley |
| Thyroid issues in PHTS | Proffessor Kristien Boelaert |
Venue Information
Address:
Sense TouchBase Pears
Bristol Road, Selly Oak
Birmingham, B29 6NA
Getting There:
- Just a 2-minute walk from Selly Oak train station.
- Free onsite parking is available for those driving.
Tickets
This event is FREE, but we kindly ask you to register in advance to help us manage numbers.
Register Now on Eventbrite
Travel Bursary
To ensure everyone can attend, a travel bursary is available for patients and families who need assistance with transportation costs. For more information or to apply, please contact Kelly directly.
We hope to see you there!
Snippets from our patient meetings over the years …
