GoPI3Ks (Genetic Overgrowth PI3K Support)

This is our website for anyone who wants to check us out: gopi3ks.com

If you have a spare moment, could you please nominate GoPI3Ks to be in with a chance of winning £1,000. THANK YOU 🙏 #nominateACharity" target="_blank" rel="nofollow noopener">movementforgood.com/draws/1000?cn=…

Summer self-care ideas! 😎 Which one(s) do you want to try?

Why are we on this earth if not to be there for each other 💕 Image: instagram.com/themoodysociety

CamRARE’s #RAREsummit is back. If you work in rare science, healthcare, research, funding, advocacy or live with a rare condition, this is the place for you. Join in person or online 7 Oct 2026: raresummit26.eventbrite.co.uk/?aff=mediapart… #RAREsummit26 #RareDisease #RareConditions @camraredisease

The M-CM Network’s patient/caregiver panel about the use of low-carbohydrate diets to address a range of issues related to M-CM and PROS. Mandy Sellars of the UK organization GoPI3Ks will join us. Tuesday July 21st 1pm Eastern Register at us06web.zoom.us/meeting/regist…

Jump back up July from @actionhappiness

For those of you living with or affected by M-CM, our friends at the U.K M-CM are holding a family meet up on the 15th of August 2026 10am-3.30pm at CAFT, Altrincham. For those who are interested or have any questions, please contact Rebecca Bebbington-White at: bx51@hotmail.com

For those of you on TikTok & also interested in scientific research in to PROS we have some exciting news. Alex and Oliwia, researchers working with Ralitsa Madsen will be posting engaging science updates on TikTok. If you’re interested then search in TikTok for AO activated 😊

We’ve recently developed an information sheet about pushchairs for children with overgrowth. You can access this either via this PDF or scroll to the bottom of our website page: “Children’s resources” for more details: acrobat.adobe.com/id/urn:aaid:sc… gopi3ks.com/childrens-reso…

We are holding another community chat on Wednesday 17th June at 7pm. If anyone would like to join please let me know your email address & I’ll send you the link 😊

#JoyfulJune brought to you by @actionhappiness

So grateful to Karen, Helen, Eva & Jack for taking on a 18 mile walk for us here at GoPi3Ks: donorbox.org/karen-helen-ev…

Big news today: Vijoice (Alpelisib) has been approved for use by the EMA. This medication addresses an unmet medical need for patients with severe or life-threatening PIK3CA-related overgrowth spectrum (PROS) disorders ema.europa.eu/en/news/first-…

Very interesting presentation by Iksha Kumar on a patient with AVM and a PIK3CA mutation showing a good response to Alpelisib. Others shared they also have patients with CLOVES syndrome and spinal AVMs with PIK3CA mutations, also showing good responses to Alpelisib. #ISSVA

We are very grateful to our supporters Karen, Helen, Eva & Jack who are undertaking a 18 mile walk for GoPI3Ks. If you’d like to donate & support them please see link here: donorbox.org/karen-helen-ev…

When people get together with a shared purpose, remarkable things can happen Image: instagram.com/6secondseq

A video looking at the evolving perspective in PROS - diagnosis & treatment: youtu.be/fPvAcTRJvto

An article with lots of detail on the PIK3CA gene for those who maybe interested: jeen.health/library/genes/…

It’s okay! 💛

Meaningful May - Day 17: Find a way to make what you do today meaningful actionforhappiness.org/meaningful-may #MeaningfulMay