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:
Video from NORD / RARE EDU / Osmosis.org explaining what PROS is: 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.
We understand how difficult it can be to explain PROS to a child living with this condition but also siblings, school friends & children in general.
Here are links to some informative websites aimed at children of different ages & different settings, such as home, school & doctors. As well as a great comic book & workbook.
Please see our resources section for links to various articles that may help such as but not limited to:
- What is PROS?
- How will my child cope living with a rare condition?
- How will I as a parent manage?
- How can I help my other children/siblings?
- I need specialist clothing/shoes, where can I go for these?
- I feel I am the only one, are there support groups out there?
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:
A big thank you to Linda Roksund for allowing us to upload their video & leaflet.
This little section is dedicated to Ralitsa Madsen who through her extensive scientific research in to PIK3CA & PROS has made a huge difference & impact within the PROS community.
We are very fortunate to have someone with so much movtivation & openness to continue the search for answers. Not just for the PROS community but for cancer research too.
Here is a link to Ralitsa’s blog covering various aspects of her PIK3CA research: Ralitsa Madsen’s Blog
Here is a link to her latest presentation at the CLOVES awareness day August 2021: CLOVES awareness day presentation
WHO ARE WE? Meet your GoPI3Ks team.
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*)