Looking forward to @DHSummerSchools and talking about #PatientCentricity #usability #Interoperability #SecretOfConsentGetConsent

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While it’s true the majority of children diagnosed with #CDKL5 are females, there has been an increase in males diagnosed in recent years. Our #MarigoldStudy is open to both. See if your child is a fit at

Places are filling up fast for our Cambridge Rare Disease Showcase. Make sure you get yours by signing up today!

#BBCPanorama thank you for showing the social care crisis for families like ours. Caring for my severely disabled child is often easier than the soul destroying fight for social care and education #FightingForMyChild

Thanks for the mention! CDKL5UK: @alecpett I totally agree, CDKL5 Deficiency is a rare and complex disorder with early onset intractable seizure disorder. But seizures is just one part of the significant impact on our kids and families. Sleep problems is a huge problem! Agai…

Thank you @CDKL5UK Cystic fibrosis patients, in particular, need digital technology to collect, store, track and share their complex healthcare data. We believe this new model for patient engagement has the potential to improve outcomes for other patient types, too.

Recently-approved Epidiolex (cannabidiol) from $GWPH has efficacy in #CDKL5 deficiency, #dup15q and others comparable to #Dravet and #LGS. Efficacy and safety sustained for at least 48 weeks. Need to find ways to give them access now that it is approved! 👉

⚡️ “APPG Event: Effect of Brexit on European Reference Networks ” by @GeneticAll_UK

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