GoPI3Ks (Genetic Overgrowth PI3K Support)
@GoPI3Ks
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A UK registered charity (1176289) for those living with PROS (PIK3CA Related Overgrowth Spectrum)
Lancashire, UK
Joined January 2016
This is our website for anyone who wants to check us out:
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Article looking at pharma companies that are developing treatment for Vascular Malformations:
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We signed the #IAmNumber17 open letter to the government, calling for greater awareness and support to ensure people with rare diseases receive the care and understanding they deserve and need. Together, we can make a difference. Read the full letter here:
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RT @RareBeacon: It’s time to #ChangeTheRareFuture so that people with rare diseases receive faster diagnoses and better access to treatment….
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Have a great weekend everyone, whatever you do I hope it’s filled with fun & laughter & good times 🥰
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Behind every statistic is a person, a family, a story. Let's raise awareness for the challenges faced by the rare disease community. Visit the I am number 17 website to learn more: I Am Number Seventeen - Fridge Diaries.#IAmNumber17 #RareDisease
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Rare diseases are often invisible to the outside world, but their impact is profound. 📷 Watch the #FridgeDiaries film to understand the hidden reality of living with a #RareDisease and share it with your community to help raise awarensses.#IAmNumber17
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We're proud to support the #IAmNumber17 campaign & advocate for the rare disease community 💛🎥Watch the #FridgeDiaries film and learn more about the hidden reality of living with a #RareDisease. Help us raise awareness and share the Fridge Diaries film:
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RT @mentalhealth: It’s natural to have negative thoughts sometimes. But if you get stuck in a pattern of negative thinking, it can harm you….
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1 in 17 people in the UK will be affected by a #RareDisease. Their stories are often invisible and go untold. We're changing that 💛.The #FridgeDiaries film launches next week. Learn more about the I am number 17 campaign at:#IAmNumber17
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Happy weekend everyone, hope the sun is shine where you are & you have a fab one 😀
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RT @actionhappiness: Make sure to include yourself in the list of things to take care of this week . Image: https:/….
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An updated list from March this year from ISSVA (International Society for the Study of Vascular Anomalies) I didn’t know there were so many different ones: .
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Hope everyone is having a great weekend 🥰
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From the @LGDAlliance Relay Therapeutics recently opened a clinical trial in PIK3CA-driven vascular malformations. They are holding a webinar on June 24 at 7:30pm EST. Register: .Questions? clinicaltrials@relaytx.com. Video:
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