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.
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: firstname.lastname@example.org
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.
GoPI3Ks are proud media sponsors of RAREfest20
Despite the fact rare diseases affect one in seventeen people, those affected tell Cambridge Rare Disease Network they’ve been all but forgotten during the last six months of the COVID-19 pandemic. With this in mind, CRDN is making it their priority to push rare diseases into the spotlight. We GoPI3Ks are proud to be media partners for this important event in the rare disease calendar.
RAREfest20 is a rare disease inspire virtual, global festival that will spark curiosity, challenge perceptions, showcase science, inspire innovation and give a voice to rare disease patients and their families. Taking place on November 28th, this FREE event for the experts and the curious of all ages
promises a feast of excellent speakers, exhibitors, films, expert talks and patient voices. A great opportunity to mix and mingle with the rare disease community through live Q&A and chat rooms.
RAREfest20 is a public-facing festival for the experts and the curious of all ages. For the rare disease community, going online makes this festival even more accessible. Those who’ve been shielding can be there. Those who might struggle with travel to a physical event can join in. Those whose medical needs might prevent them attending can engage and take part. Not only this, but taking RAREfest20 online allows it to be a truly global event where anyone in the world can attend!
For more information visit the Festival website. Tickets are free and available through the platform
Below is the latest newsletter from December 2019
Below is the latest newsletter from December 2018
Below is the latest newsletter from December 2017
Below is the newsletter from December 2016:
Below is the newsletter from January 2016:
Below is the link below for our first newsletter from 2014: