GoPI3Ks (Genetic Overgrowth PI3K Support)

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

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

Read all about the trial here: clinicaltrials.eu/drug/miransert…

New article released yesterday. To read the full article click on the PDF icon in the following link: academic.oup.com/pnasnexus/adva…

Read the paper here: mdpi.com/2073-4409/15/9…

#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. ➡️ ow.ly/qqAP50YSWUl

To take part in the survey, 1 for those over 18 living with a condition & 1 for patents, please follow this link: facebook.com/share/1GzqH2Dj…

Read the paper here: pubmed.ncbi.nlm.nih.gov/41928438/

🚨 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) 🔗 bit.ly/AlfieMilneYIA Please share with colleagues. #lymphaticmalformations #complexlymphaticmalformations

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

@GoPI3Ks [30/4, 22:02] José Manuel Collado: lavozdelpaciente.cinfa.com/admin/s-23812 [30/4, 22:02] José Manuel Collado: Soy vicepresidente de esta asociación, y si quedamos dentro de los 100 primeros ,nos financian este prpyecto tan necesario para nuestros chic@s. Gracias amores 💕

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: ncbi.nlm.nih.gov/sites/books/NB…

You don’t have to have it all figured out right now Image: instagram.com/abbierosie_

Remember: Doing your best looks different every day Image: instagram.com/sue.larkey