Genetic Overgrowth PI3K Support – Supporting patients & families living with PIK Related Overgrowth Spectrum (PROS)

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.

We have created a PDF slide document which shows you some basic facts about PROS:

What is PROS

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.

WHAT IS PROS for doctors

WHAT IS PROS for patients

EXPLAINING PROS TO CHILDREN

Our lovely friends at WonderFIL smiles have created a leaflet about PROS especially for children to help them hopefully understand a little more about this condition. Please see their website:

PROS leaflet for children

A big thank you to Linda Roeksund for allowing us to upload their video & leaflet.

WHO ARE WE? Meet your GoPI3Ks team.

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 who have family/friends with the condition.