GoPI3Ks (Genetic Overgrowth PI3K Support)@GoPI3Ks

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

 Lancashire, UK
gopi3ks.com
Joined January 2016
1,415 Photos and videos
This is our website for anyone who wants to check us out: gopi3ks.com
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
Action for Happiness
@actionhappiness
Sep 17
There’s room for growth, but there’s room for rest too Image: instagram.com/twloha
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
GrauperaLab@MarionaGraupera
Sep 15
If you are interested in vascular anomalies, registration for the next VAC meeting is now open: vacure-conference.net
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A more detailed explanation of HFH HemiFacial Hyperplasia: incitefulmed.com/resources/g…
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
CamRARE (Cambridge Rare Disease Network)@camraredisease
Sep 8
Join us on Wed 7 Oct for a packed programme of talks, panels and interactive workshops at #RAREsummit26 - exploring policy, care, health data, partnerships and innovation. 📍 Cambridge or online 🎟️ Programme & tickets: camraredisease.org/raresummi… #RareDisease #RareConditions
Rare summit branded graphic with photos of previous summits and title: Agenda is now available to view

ALT Rare summit branded graphic with photos of previous summits and title: Agenda is now available to view
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Join CamRARE on Wed 7 Oct for a packed programme of talks, panels and interactive workshops at #RAREsummit26 - exploring policy, care, health data, partnerships and innovation. 📍 In person or online
🎟️ Programme & tickets: camraredisease.org/raresummi… #RAREsummit26 @camraredisease
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
Action for Happiness
@actionhappiness
Sep 4
Plan for the weekend: Be kind to everyone, including yourself Image: instagram.com/littlesisterss…
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Read the article here: pubmed.ncbi.nlm.nih.gov/4211…
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Self care September
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We give grants to help those living with & affected by PROS. See below a small example of what we provide funding for but happy to help in any way we can. Here’s our application form: docs.google.com/forms/d/1gMy…
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
Action for Happiness
@actionhappiness
Aug 27
You can’t pour from an empty cup. Fill your own first so you can help others Image: instagram.com/katherineherre…
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You can read the article here and also listen the article instead of reading if you wish: hcplive.com/view/genomics-ch…
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Free community webinar: Finding your confidence: exploring identity and acceptance: 📢  Finding your confidence: exploring identity and acceptance 📅  Tuesday 8th September 6:30PM - 7:30PM Sign up here: changingfaces.tfaforms.net/3…
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
Ataxia_aware CIO 1184030 (previously Ataxia_and_me@Ataxia_aware
Aug 21
Have you every experienced issues with travel due to disability? Tell us your experiences with taxis, buses, trains, ect. in the comments. #Ataxia #Awareness #RareDisease #StrongerTogether #PatientsHelpingPatients #Disability #Charity
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Who might you bump into at CamRARE’s #RAREsummit26 on 7 October? Researchers, clinicians, innovators, patient groups & people with lived experience. Network over coffee, at posters & stands, in meeting booths raresummit26.eventbrite.co.u… #RareDisease #RareConditions @camraredisease
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A look at the recent phase 2 study for PIK3CA (PROS) This study gives a good explanation of the drug, who’s eligible etc research.patient.info/resear…
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Renal vein thrombosis as a reversible vascular renal complication of CLOVES syndrome: a case report researchgate.net/publication…
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
NCBRS Worldwide Foundation - Nicolaides Baraitser@ncbrsfoundation
Aug 12
Learn more at: ncbrs.com 🧡💚💙 #Dazzle4Rare #Dazzle4Rare2026 #RareDiseaseAwareness #PatientAdvocates #PatientGroups #WorkTogether #StrongerTogether @dazzle4rare @ifaiarthritis @ataxia_and_me @BarbyIngle @sarcoid_network @globetrotteri @FibroFlutters @gopi3ks
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This is a pretty fascinating article, be interesting to see if this is something that can be used more often (if reliable) to test for PROS: pubmed.ncbi.nlm.nih.gov/4223…

Mosaic Variant in Unilateral Woolly Hair in a Girl With PIK3CA-Related Overgrowth Spectrum - PubMed

The phosphatidylinositol-3-kinase (PI3K)-AKT-mTOR pathway plays a central role in cellular growth and survival, and somatic activating variants in PIK3CA cause PIK3CA-related overgrowth spectrum...

pubmed.ncbi.nlm.nih.gov
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
NCBRS Worldwide Foundation - Nicolaides Baraitser@ncbrsfoundation
Aug 12
You can contact us on: contactus@ncbrs.com and learn more at: ncbrs.com 🧡💚💙 #Dazzle4Rare #Dazzle4Rare2026 #RareDiseaseAwareness #PatientAdvocates #PatientGroups #WorkTogether #StrongerTogether @dazzle4rare @ifaiarthritis @ataxia_and_me @BarbyIngle @gopi3ks
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GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
NCBRS Worldwide Foundation - Nicolaides Baraitser@ncbrsfoundation
Aug 12
Replying to @dazzle4rare @IFAiArthritis @BarbyIngle @globetrotteri @FibroFlutters @GoPI3Ks @hesaonlineinfo @RareRevolutionM @SpasticWorld
@iPainOfficial @unitedadvocacy @kaleidoscoperare @mygeneticmeds @buttahflyk @my_spoonie_sisters @ncbrsfoundation @rarepatientvoic
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