@GoPI3Ks

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

 Lancashire, UK
gopi3ks.com
Joined January 2016
  • Tweets5.9K
  • Following353
  • Followers574
1.4KMedia
This is our website for anyone who wants to check us out: gopi3ks.com
2
21
25
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
1
31
4
164
6,516
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
3
2
562
A more detailed explanation of HFH HemiFacial Hyperplasia: incitefulmed.com/resources/g…
47
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

4
1
6
503
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
1
3
64
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…
1
136
7
425
9,124
Read the article here: pubmed.ncbi.nlm.nih.gov/4211…
3
58
Self care September
46
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…
1
2
77
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…
4
160
13
557
12,503
You can read the article here and also listen the article instead of reading if you wish: hcplive.com/view/genomics-ch…
1
1
57
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…
54
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
3
1
93
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
1
39
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…
1
62
Renal vein thrombosis as a reversible vascular renal complication of CLOVES syndrome: a case report researchgate.net/publication…
53
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
1
3
5
49
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
50
GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
NCBRS Worldwide Foundation - Nicolaides Baraitser@ncbrsfoundation
Aug 12
You can contact us on: [email protected] and learn more at: ncbrs.com 🧡💚💙 #Dazzle4Rare #Dazzle4Rare2026 #RareDiseaseAwareness #PatientAdvocates #PatientGroups #WorkTogether #StrongerTogether @dazzle4rare @ifaiarthritis @ataxia_and_me @BarbyIngle @gopi3ks
2
1
2
34
GoPI3Ks (Genetic Overgrowth PI3K Support) retweeted
NCBRS Worldwide Foundation - Nicolaides Baraitser@ncbrsfoundation
Aug 12
Replying to @ncbrsfoundation @dazzle4rare @IFAiArthritis @BarbyIngle @globetrotteri @FibroFlutters @GoPI3Ks @hesaonlineinfo @RareRevolutionM @SpasticWorld
@iPainOfficial @unitedadvocacy @kaleidoscoperare @mygeneticmeds @buttahflyk @my_spoonie_sisters @ncbrsfoundation @rarepatientvoic
1
5
49
Load more