GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks
A UK registered charity (1176289) for those living with PROS (PIK3CA Related Overgrowth Spectrum) gopi3ks.com Lancashire, UK Joined January 2016-
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We support undiagnosed children’s day today, for more information & support please see SWAN’s website here: geneticalliance.org.uk/support-and-in…
Have you registered for our brand new webinar series yet? 💻🧬 Our Decoding Diagnostics series will provide clarity and guidance to individuals and communities within the rare disease space. 👉 Register for Part one and Part two now! ow.ly/yMmL50RgUH9
** TODAY ** #UndiagnosedChildrensDay 26th April #UCD2024 #SyndromesWithoutAName #RareDisease we support the day at @Ataxia_and_Me #Ataxia #charity Wales (wear something PINK cc @SWAN_UK @GeneticAll_UK @SWANUK_Cymru @WalesGenePark
Still chance to vote for us until midnight: health.movementforgood.com/index.php?cn=1… it would mean the world to us to win to keep on supporting those with PROS
Still chance to vote for us until midnight: health.movementforgood.com/index.php?cn=1… it would mean the world to us to win to keep on supporting those with PROS
The majority of individuals living with rare disease report having felt anxious, stressed, and/or depressed due to their condition. Support the #IAmNumber17 campaign and help us be heard to #ElevateCareForRare. iamnumber17.org.uk/elevate-care-f…
#UsherSyndrome #RareDisease features on #EastEnders #StrongerTogether
Join us TOMORROW for our artist livestream! 💻
Join us TOMORROW for our artist livestream! 💻
The majority of individuals living with #raredisease report having felt anxious, stressed, and/or depressed due to their condition. Support the #IAmNumber17 campaign and help us be heard to #ElevateCareForRare. iamnumber17.org.uk #StrongerTogether @GoPI3Ks @M4RareDiseases
Attending our first workshop as part of the #AppearanceCollective @CAR_UWE
Sign up to receive a passport for you, someone your care for, a patient organisation or a healthcare setting here forms.gle/DfynFkxYzZHnAD…
Call for participants!❗️ We’re looking for 13-17-year-olds with visible differences who use social media to take part in an online interview study. Register your interest here: go.uwe.ac.uk/RegisterYourIn… #SocialMedia #VisibleDifference #YoungPeople #Teenage
PIK3CA regulates development of diabetes retinopathy through the PI3K/Akt/mTOR pathway: journals.plos.org/plosone/articl…
We will be reviewing initial applications for our new advisory panel for people with lived experience of mTOR pathway related conditions soon- find out more below! @UKTSA @GoPI3Ks @ptenuki @LAMAction @myrovlytis @ChildGrowthUK @EpilepsyInst
We will be reviewing initial applications for our new advisory panel for people with lived experience of mTOR pathway related conditions soon- find out more below! @UKTSA @GoPI3Ks @ptenuki @LAMAction @myrovlytis @ChildGrowthUK @EpilepsyInst
🚨 For #MentalHealthAwarenessWeek this year (13-19 May), we want to get the mental health conversation moving. 💭 Tell us one thing you want the world to know about living with mental illness and we'll try to feature it on our social media channels 👇
Klippel-Trenaunay Syndrome: To Be or Not to Be Afraid: cureus.com/articles/14828…
🚨 Only 1 day left to apply for the Patient Group Mentoring Programme! Connect with the rare disease community, boost your confidence and expand your knowledge in a variety of areas. Apply by midday tomorrow: 👇 ow.ly/3JWg50R6oIR
Thank you so much to the wonderful team at Blackgate Paranormal: blackgateparanormal.co.uk for an amazing night of spooky goings on as well as raising a fantastic £372.15 for GoPI3Ks. Highly recommend this company if you want to experience a paranormal investigation 🥰
A spooky evening ahead for tomorrow night 👻👇🏻all in aid of GoPI3Ks 🥰
A spooky evening ahead for tomorrow night 👻👇🏻all in aid of GoPI3Ks 🥰
It’s never too late to make a start or try again. The best time for new beginnings is now Image: @inspirivity
What an amazing achievement by Adam, completing the Brighton Marathon in aid of GoPI3Ks & raising over £1,300 for us. Huge thank you to Adam, we truly appreciate all your support 🥰
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dazzle4rare @dazzle4rare
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10K Followers 6K Following #SYNGAP1 🧬 = 🧠NDD DEE causing #Epilepsy #Autism #ID #Sleep #GI. Incidence = 6️⃣.1️⃣/💯k ICD10 https://t.co/4UJNF5bKTl https://t.co/pjCrzqlbV7 🎙
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876 Followers 607 Following 29. Dutch. Traveling around the 🌎 to meet others with the same ultra rare condition (#PIK3CA #PROS). Board member @hevas_nl. Fulltime crochet designer.
EURORDIS-Rare Disease.. @eurordis
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416 Followers 676 Following Support and advice for patients with hemangiomas, vascular anomalies and over/undergrowth syndromes #ISSVA #Vascern #Hecovan
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Happy Undiagnosed Children's Day! Around 6,000 children are born every year in the UK with a genetic condition likely to remain undiagnosed. There are so many families that need our support. Will you share this post to help them find us sooner? #UCD2024 #SyndromesWithoutAName
📣 Help us reach more families this Undiagnosed Children's Day by sharing our reel! 📣 @SWAN_UK is the only dedicated community for UK based families of children aged 0-25 years old who are searching for a genetic diagnosis. #UCD2024 #SyndromeWithoutAName ow.ly/CCLT50RoLoA
** TODAY ** #UndiagnosedChildrensDay 26th April #UCD2024 #SyndromesWithoutAName #RareDisease we support the day at @Ataxia_and_Me #Ataxia #charity Wales (wear something PINK cc @SWAN_UK @GeneticAll_UK @SWANUK_Cymru @WalesGenePark
It’s the last day of the Health & Wellbeing special draw so be sure to place your nominations before midnight to ensure your favourite charities, not-for-profit organisations and community support groups are in with a chance of winning £5,000! Nominate: brnw.ch/21wJc7e
@GoPI3Ks @benefactgroup Done Mandy hope you win xxx
Will you help us, raising awareness for Rare diseases #ElevateCareForRare ##IAmNumber17
#UsherSyndrome #RareDisease features on #EastEnders #StrongerTogether
The awareness is spreading! 📢 UK soap, @bbceastenders , is set to highlight Usher syndrome as a character gets this devastating diagnosis next week. Viewers in Ireland can watch on @RTEOne , Monday to Thursday at 7:30pm. Read more : mirror.co.uk/tv/tv-news/bbc… #UsherSyndrome
If you have a spare moment would you please consider voting for us at @GoPI3Ks We could win £5,000 which would really help us. Thanks xx
@benefactgroup are holding a draw for charities to win £5,000. GoPI3Ks could be in with a chance if you’d be kind enough to nominate us here please: health.movementforgood.com/index.php?cn=1… it would make a HUGE difference to our small charity. Thank you xx
The majority of individuals living with #raredisease report having felt anxious, stressed, and/or depressed due to their condition. Support the #IAmNumber17 campaign and help us be heard to #ElevateCareForRare. iamnumber17.org.uk #StrongerTogether @GoPI3Ks @M4RareDiseases
Join us LIVE Wed 24th April at midday! 🎙️💻 What would you like to know about the portrait process? Let us know in the comments! Amit, Maia, and Gail will try and answer as much as they can on the livestream. #VisibleDifference #Neurofibromatosis #NF1 #OilPaintingPortrait
We will be reviewing initial applications for our new advisory panel for people with lived experience of mTOR pathway related conditions soon- find out more below! @UKTSA @GoPI3Ks @ptenuki @LAMAction @myrovlytis @ChildGrowthUK @EpilepsyInst
📣 We are looking for people with lived experience of mTOR-pathway related conditions to take part in an advisory panel 🗣️ We want to hear your thoughts on our research plans and how to share findings More info ⬇️ mTOR node: bit.ly/3TI0njQ [email protected]
Diary Date #DNADay the code for life 25th April #DNA #Health #RareDisease we support the day at @Ataxia_and_Me #Ataxia #charity Wales
I love this!! #WomenInRare
We are delighted to launch our newest edition, #WomenInRARE, proudly supported by @AlexionPharma. We ask of you today to take this opportunity to see us, hear us, and please share this edition on behalf of the women in your lives. Read in full here: bit.ly/WomenInRARE
Active April - Day 16: Go exploring around your local area and notice new things actionforhappiness.org/active-april #ActiveApril
So tomorrow night is the charity ghost hunt, I’m looking forward to seeing everyone 👻 Only 2 spaces remaining if anyone is interested? blackgateparanormal.co.uk So who roams around this building? 👻
#ThisMorning science behind limiting screen time, this doesn't include SEND kids, there's research quite the opposite for the benefits of screen time. One size does not fit all, same old mainstream narrative !!! How about a balanced view ? 🤔 🙄
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