About GoPI3Ks (Genetic Overgrowth PI3K Support)
Gopi3Ks was registered as a U.K. charity in 2017 to support those worldwide living with the rare overgrowth condition PROS. This is an acronym for PIK3CA Related Overgrowth Spectrum which is an umbrella term for a number of conditions affected by a mutation in the PIK3CA growth gene.
Our aim is by providing financial grants to help the extra costs of living with PROS. This can include but isn’t limited to: Wheelchair’s, scooters, adapted clothing & hospital appointment expenses. We also run family weekends &/or zoom calls with leading doctors & scientists in the U.K. who are able to discuss recent research & offer their thoughts to our patients & families. We also have social media pages on facebook, Twitter & Instagram to inform members of up to date research, up & coming rare events etc.
For Rare Disease Day we will be share information throughout the day with Rare stats, as well as more detailed information about PROS & what it’s like to live with this condition.