GoPI3Ks (Genetic Overgrowth PI3K Support)

A UK registered charity (1176289) for those living with PROS (PIK3CA Related Overgrowth Spectrum)

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

This is our website for anyone who wants to check us out: https://t.co/o040olPM7N

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

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 😊

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

#JoyfulJune brought to you by @actionhappiness

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

So grateful to Karen, Helen, Eva & Jack for taking on a 18 mile walk for us here at GoPi3Ks: https://t.co/QoY3hMEjC8

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

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

https://t.co/HEMPgL6TiF

[HEVAS @hevas_nl]

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

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

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:

https://t.co/QoY3hMEjC8

[Action for Happiness @actionhappiness]

When people get together with a shared purpose, remarkable things can happen

Image: https://t.co/k68pooPqz6

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

A video looking at the evolving perspective in PROS - diagnosis & treatment: https://t.co/9MKtJ1dQi0

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

An article with lots of detail on the PIK3CA gene for those who maybe interested: https://t.co/FIaxdgvUxG

[Positively Present @positivepresent]

It’s okay! 💛

[Action for Happiness @actionhappiness]

Meaningful May - Day 17: Find a way to make what you do today meaningful https://t.co/QObG6cjVZu #MeaningfulMay

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

Read all about the trial here: https://t.co/o9FOB3jYpr

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

New article released yesterday. To read the full article click on the PDF icon in the following link: https://t.co/i29C1iswCz

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

Read the paper here: https://t.co/gT6WITxiUk

[LGDAlliance @LGDAlliance]

#PleuralEffusion is fluid around the lungs that can make breathing harder. For people with #ComplexLymphaticAnomalies or isolated #LymphaticMalforamtions, it may come and go—or ongoing.

Often invisible. We see you.

➡️ https://t.co/hzjjUsBtSC

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

To take part in the survey, 1 for those over 18 living with a condition & 1 for patents, please follow this link: https://t.co/3fFP6G0mE0

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

Read the paper here: https://t.co/kLdPJUO9iv

[LGDAlliance @LGDAlliance]

🚨 Funding Opportunity 🚨
Early career researchers in CLA and Isolated LMs: apply for the Alfie Milne Young Investigator Award.

📅 LOI due May 29, 2026 (11:59 PM ET)
🔗 https://t.co/omDvo33la6
Please share with colleagues.

#lymphaticmalformations #complexlymphaticmalformations

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

@JosemaColladoC Hi there. I hope you’re well? Unfortunately the link you sent me in this reply doesn’t work.

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

I came across this paper from 2023, a really comprehensive read with many interesting insights including: Evaluations Following Initial Diagnosis, Treatment & Recommended Surveillance for Individuals with PIK3CA-Related Overgrowth Spectrum: https://t.co/CyySA6KWCu

[Action for Happiness @actionhappiness]

You don’t have to have it all figured out right now

Image: https://t.co/Zz3T35rmLM