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.

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

GOPI3Ks and AllStripes Partner for New PROS Research

GoPI3Ks and AllStripes are partnering to create a database that will enable new PIK3CA-related overgrowth spectrum (PROS) research projects!
We’re looking for patients/families willing to contribute their de-identified medical records to make this effort as strong as possible.
AllStripes is a platform that makes it easy for rare disease patients and caregivers to contribute to treatment research from home. Participate by signing up at allstripes.com/pros and the AllStripes team will collect the records on your behalf, at no cost, and extract insights to power research. The more we know about PROS, the more we can do for PROS patients.

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 are proud to be part of the organising committee for this event.

The goals for this meeting are:

  • To bring together the experts in the PIK3CA pathway including clinicians, clinical researchers and basic scientists to allow opportunities to present new information, share data, foster collaboration and encourage networking
  • To stimulate new ideas 
  • To encourage new researchers to enter the field, to collaborate with others in the field and to collaborate with our patient organizations.
  • To identify the gaps and unmet needs for our heterogenous patient populations.

For more information please see: International Scientific Meeting 2021

To register for free as a patient/care giver please email: shannon@clovessyndrome.org

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.

Baywatch 2021 – DMUK tackles parking industry over disabled parking abuse.

A common & infuritating problem for many disabled motorists is not being able to park at their desired destination. The major complaint is that the disabled bays are all occupied with cars not displaying a Blue Badge.

When the survey closes the results are calculated and published. The charity presents this data to the parking industry & encourages it to take the parking problems of disabled motorists more seriously & manage their parking provision correctly. The Baywatch campaign also aims to change public attitudes by bringing to the attention of disabled bay abusers the impact that their actions can have.

For more info & how you too can take part please see link: Baywatch 2021

Below is the newsletter from December 2020

GoPI3Ks Newsletter December 2020

Below is the newsletter from December 2019

GoPI3Ks newsletter December 2019

Below is the newsletter from December 2018

GoPI3Ks newsletter December 2018

Below is the newsletter from December 2017

gopi3ks newsletter 2017

Below is the newsletter from December 2016:

December 2016 newsletter

Below is the newsletter from January 2016:

January 2016 Issue 2 – Copy

Below is the link below for our first newsletter from 2014:

 newsletter December 2014 Issue 1_vp_2