A UK registered charity (1176289) for those living with PROS (PIK3CA Related Overgrowth Spectrum)
Joined January 2016
- Tweets 5,837
- Following 355
- Followers 567
- Likes 3,627
1,394 Photos and videos
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 😊
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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:aai…
gopi3ks.com/childrens-resour…
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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 😊
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So grateful to Karen, Helen, Eva & Jack for taking on a 18 mile walk for us here at GoPi3Ks: donorbox.org/karen-helen-eva…
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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-…
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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
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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-eva…
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
When people get together with a shared purpose, remarkable things can happen
Image: instagram.com/6secondseq
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A video looking at the evolving perspective in PROS - diagnosis & treatment: youtu.be/fPvAcTRJvto
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An article with lots of detail on the PIK3CA gene for those who maybe interested: jeen.health/library/genes/PI…
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
It’s okay! 💛
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
Meaningful May - Day 17: Find a way to make what you do today meaningful actionforhappiness.org/meani… #MeaningfulMay
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New article released yesterday. To read the full article click on the PDF icon in the following link: academic.oup.com/pnasnexus/a…
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
May 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
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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/1GzqH2DjU…
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
Apr 30
🚨 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
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