So privileged to be part of this scheme to share real life experiences of living with a rare condition with medics who really want to make a difference. Medics4RareDiseases Beacon for Rare Diseases CystinosisUK

Congratulations to the winner and runners-up for the Student Voice Prize 2023! 🏆 Look out for the winning essay and runners-up blogs which will be available to read on #RareDiseaseDay 📷

The Student Voice Prize
Beacon for Rare Diseases
#SVP23

Join us (virtually) for a Cystinosis Connect online meeting at 7.30pm on Thursday 29 February - Rare Disease Day!

eventbrite.co.uk/e/cystinosis-c…

🍽️Lunch & learn - Wednesday 12:30
⚖️UK Citizens Jury on Genome Editing

'Are there any circumstances under which a UK Government should consider changing the law to allow intentional genome editing of human embryos for serious genetic conditions?'

Friendly reminder: breathe deeply
Doing so for only a few minutes can clear your thoughts while calming your body.

If you or someone you care about needs help, please reach out.

#WorldMentalHealthDay #RareDisease #cystinosis

'It amazes me how people relate to you when you share your story, and how people are so kind towards you when they understand you more. We need more of this everywhere and more often.” #HumanLibrary #UnjudgeSomeone #Madagascar
humanlibrary.org/the-human-libr…

SAVE THE DATE
The 2024 CNE International Cystinosis Conference will be hosted by CystinosisUK in Manchester, England. Scientific meeting on 25th July followed by family meeting on 26th and 27th July. cystinosis-europe.eu

70% of rare diseases show their first signs in childhood but take an average of five years to diagnose. 🦓 Help us drive an attitude change towards rare diseases!

If you would like to support the charity visit the link below. ❤️ #DareToThinkRare
m4rd.org

... and we can confirm there were Morris dancers who refused to be beaten by the weather and danced on

Phew!
The #CRNnashville Conference agenda is now final. Lots of info on the event at bit.ly/3hsTpNy.

#cystinosis #RareEvent #RareDisease

Collaboration is key. We work with organisations around the world & recognise the importance and power of the community when we come together for a common cause.

Learn more about Cystinosis Network Europe (CNE) and the organisations involved here :

cystinosis.ie/international-…

Dear @google. Having just received this email from you I'm wondering if you're becoming a pain in the butt?

1 thing about cystinosis...It is not a kidney disease, it’s an all-body disease. And there’s a common misconception that sensitive eyes means strictly sensitivity...it’s not just having “sensitive” eyes. It affects our vision greatly as well. -Courtney P. #CystinosisAware #1thing