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Welcome to GoPI3Ks.


We are a support group based in the UK for patients and the families & friends of patients with a Segmental overgrowth in the PIK gene, known as PROS: (PIK3CA Related Overgrowth Spectrum).


PROS is an umbrella term used for a number of conditions, please see our Segmental Overgrowth Syndromes section for more details on these.


Our aim is to provide information, advice and support, and to share our own experiences. Plus we are now in a position to offer financial grants to those living with PROS, for more information please email us at

So please feel free to take a look around our site and if you have any questions then you can contact our chairperson Mandy on the contact us page.


Do you want to help raise money for GoPI3Ks whilst simply shopping online, here is how you can: 


GoPI3Ks (Genetic Overgrowth PI3K Support) has partnered up with GoRaise. It’s now easier than ever before for our members and other supporters to join us in fundraising.

You can get free donations every time you shop online. It’s simple, it’s safe, and it doesn’t cost a penny.

Once you've registered with GoRaise, every time you shop online at thousands of brilliant online retailers - including M&S, John Lewis, Argos, Ebay, Sports Direct, & Expedia - those retailers will donate a portion of what you spend to our cause, for free. So, how do you get started?

Just go to our page at and register for free today.

Once you've done this, just make sure that you visit the GoRaise website and click your chosen retailer, from the list of over 3,000, each time you want to shop online.

Whether you're an individual or a company, please do sign up today, it will make a huge difference to us and we could raise £1000’s of extra funding every year just from donations generated by ordinary, everyday online shopping.

Thanks for your help!
GoPI3Ks (Genetic Overgrowth PI3K Support)






On Monday May 27th the GoPI3Ks team will be attending Darwen Live at Darwen Library Theatre 1pm-2.45pm to raise awareness & funds thanks to my amazing friend Rachel Toner. Check out the links above.



We have some fabulous items that we are going to auction on EBay, from

Madonna to Andy Murray to other tennis greats. Hopefully we will have another Gala Dinner later in the year.



We will be attending the fabulous Trawden Show this year: 

Sunday 11th of August, come along & say HI, we will have a stall

with lots of goodies to win & maybe even some more of those yummy homemade cakes that were a great success last year.





Please see the link below for our first newsletter from 2014:

 GoPI3Ks newsletter December 2014


Below is the newsletter from January 2016:

GoPI3Ks newsletter January 2016


Below is the newsletter from December 2016:

GoPI3Ks newsletter December 2016


Below is the latest newsletter from December 2017

GoPI3Ks newsletter December 2017


Below is the latest newsletter from December 2018

GoPI3Ks newsletter December 2018


We are now on Twitter: @gopi3ks I am hoping that here we can interact with each other, share stories and find out about research and current drug trials.


We are now on Facebook: I am hoping that here we can interact with each other, share stories and find out about research and current drug trials.



Registered charity no: 1176289