Welcome to GoPI3Ks

We are a registered charity (1176289) 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  click on our learn more button for more information on Segmental Overgrowth Syndromes.

Receiving a diagnosis of PROS

We know that when you first receive a diagnosis it can leave you with a mixture of emotions & thoughts. Some of these can be positive (for me I was that excited to finally receive my diagnosis that I got my own PIK3CA tattoo) However, it can also leave you with many more questions than answers. 
From personal experience I know parents can often blame themselves. One thing to remember is that PROS is caused by a random gene mutation & nothing either parent did.
 We understand that many PROS patients will also see other doctors who have very little knowledge of PROS.
This website created by Novartis gives a great breakdown of what PROS is. It also has a great downloadable fact sheet in the resources section to help others understand a little more about PROS.

Financial Assistance

Our team at GoPI3Ks understand that living with a rare overgrowth condition can & does lead to extra financial costs.

Our aim is to offer financial grants to those who have been diagnosed with PROS, this has included, but not limited to:

  • Funding mobility equipment, such as electric wheelchairs.
  • Funding specialised footwear & clothing.
  • Help with medical costs.
  • Funding family weekend expenses (accommodation & travel*)

For more information & an application form please email us at: gopi3ks@yahoo.com

Helpful resources:

We understand that being diagnosed with & living with a rare medical condition can bring it’s own set of issues. Whether this be the extra financial burden, the psychological & mental health affect plus the feeling of being the only one out there & where to go if you need specialised footwear or clothing.
Please click on the Resource button for more information:
GoPI3Ks has social media pages on both Twitter & Facebook where you can connect with others either living with PROS or have family/friends with the condition.


For my birthday this year I’m raising money for the charity I run: www.gopi3ks.com Like last year every person who donates will go in to a raffle where 2 LUCKY WINNERS can choose 1 of these 3 FABULOUS PRIZES. £20 ODEON CINEMA VOUCHER, £20 RESTAURANT CHOICE VOUCHER (UK only for the vouchers) or a 12 MONTH SUBSCRIPTION TO DIVA MAGAZINE. Thanks to my friend Laura Sexton for donating the subscription. Thanks to all my wonderful friends who last year raised an amazing £700! What can we raise this year?
This year we raised over £1,000! THANK YOU TO EVERYONE WHO DONATED

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

 newsletter December 2014 Issue 1_vp_2

Below is the newsletter from January 2016:

January 2016 Issue 2 – Copy

Below is the newsletter from December 2016:

December 2016 newsletter

Below is the latest newsletter from December 2017

gopi3ks newsletter 2017

Below is the latest newsletter from December 2018

GoPI3Ks newsletter December 2018

Below is the latest newsletter from December 2019

GoPI3Ks newsletter December 2019