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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 14/06/2026

The general feeling this #ESHG2026! Too many interesting talks in competing sessions! Happy to have the online option to revisit those I've missed.

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 09/03/2026

Great conversations also emerged during the poster session on: • Patient & Public Involvement and Engagement (PPIE) • Translational rare disease research Huge thanks to everyone who presented and contributed to the discussions.

King's Health Partners Rare Disease Network PPIE Event
Awardees for best PPIE Poster: Alexandra Collison and Charlene Young.

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 09/03/2026

One theme kept coming up throughout the discussions: “Getting to know each other.” Inclusive research starts with relationships, built on trust, transparency and mutual respect between patients, researchers, clinicians and industry partners. #InclusionByDesign #RareDisease

Picture of King's health Partners Rare Disease Network PPIE Event organisers and speakers. Elizabeth Forsythe, GSTT; Natasha Gordon-Douglas, Sickle Cell Society; Cristina Dias, KCL; Caroline Olszewsky, Lupus UK and Foundation for ARID1B Research; Karen Liu, KCL; Marie Clough, KHP; Veysel Kocaman, John Snow Labs; Christina Forrester, KHP; Marisa Gasparini, KCL & GSTT; Rachel Simpson, Sickle Cell Society; Shams Al-Ani, KCL; Alexandra Downes. Medis4RareDisease; Rutendo Muzambi, ICL; Ania Koziel, KCL; Sondra Sondra Butterworth, RareQoL & EDIRA; Tony Lockett, KCL; Anna Kim, KHP; Dani Bancroft, Genetic Alliance

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 09/03/2026

Last week we hosted the @kingshealth.bsky.social Rare Disease Network PPIE event at @kingscollegelondon.bsky.social. Patients, researchers, clinicians, charities and industry came together to discuss one key question: How do we make rare disease research truly inclusive? #RareDisease #PPIE

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 26/01/2026

📣 Don't miss it! March 6th @kingshealth.bsky.social Rare Disease Network PPIE event, bringing patients, researchers, clinicians, students and industry partners together: demystifying the connection between patients and researchers. Poster submissions are welcome! www.tickettailor.com/events/khpra...

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 05/10/2025

Fully funded #PhD position in the RDND lab, with the MMG Simpson Lab, through the 2026 MRC DTP. Applications open October 8th. tinyurl.com/rdnd-mrcdtp @kingslsm.bsky.social @kingscollegelondon.bsky.social 🧬 🧠 #MedicalResearchCouncil #MRCDTP26 #PhDstudentship #FundedPhD #genetics #Genomics #NDDs

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 28/02/2025

I'm sorry I couldn't join, but doing my bit today to raise awareness here and with #ShareYourStripes

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 28/02/2025

The Clinical genetics team @gstt-nhs.bsky.social showing stripes for #RareDiseaseDay2025 to raise awareness for #RareDisease #ShowYourStripes Did you know that 72% of RD are genetic? And most of these start in childhood? @medicsforrare.bsky.social @kingshealth.bsky.social

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 28/02/2025

At the @kingshealth.bsky.social Rare Disease Network we have partnered with @medicsforrare.bsky.social to raise awareness for #RareDiseaseDay! To get involved wear some stripey socks and share a selfie, tagging Medics for Rare Disease with #ShowYourStripes in the caption 📸 tinyurl.com/KHPRDN

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 28/02/2025

It's #RareDiseaseDay! Rare diseases are individually rare but collectively common, affecting 3.5 million people in the UK. Bring out your stripey socks to raise awareness #RareDisease #ShowYourStripes @medicsforrare.bsky.social Find out more about RareDisease at www.m4rd.org www.rarediseaseday.org

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Rare Disease and Neurodevelopmental Disorders Lab @rdndlab.bsky.social · 22/02/2025

The @kingshealth.bsky.social #KHP Rare Disease Network has partnered with Medics for Rare Disease on #RareDiseaseDay! Help us raise awareness for #RareDisease! Throw on some stripey socks, snap a photo and post with #ShowYourStripes & @medicsforrare.bsky.social tag. tinyurl.com/KHPRDN www.m4rd.org

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