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.
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. Please see our resources section with links from Novartis aimed at children of different ages & different settings, such as home, school & doctors. As well as a great comic book & workbook.
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 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.
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.
RAREsummit21: Cambridge Rare Disease Network:
RAREsummit21 is CRDN’s 5th major conference, our first held at Cambridge Judge Business School in 2015 with a room packed with the greatest minds in rare diseases from Cambridge and around the world. Professor Stephen Hawking gave a video address to share his own rare journey.
At RAREsummit21, we’ll be circling back to some of the keynote speakers and themes from our first event in 2015 and asking …“What progress have you made?” and “What are your vision and plans for the future?”
We would also love to hear from you, our rare community! How has your company, organisation or patient group developed in that time? Have you reached any major milestones and what are you focussing on in the next 5 years?
There are over 40 key opinion leaders taking part in panel discussions, fireside chats, workshops and live pitching sessions alongside over 20 interactive exhibition stands, short films, and posters in the gallery.
Head over to our RAREsummit21 website to pick up your tickets & find the draft programme, speaker details, and summit highlights with more details being added over the coming weeks: RAREsummit21 website
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