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Cambridge Rare Disease Network (CamRARE) Profile picture
Cambridge Rare Disease Network (CamRARE)
@camraredisease
Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
Mar 17, 2022 • 10 tweets • 7 min read
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Through 2021 young people living with #RareDiseases share their experience of transitioning from paediatric to adult care in this new report created by Costello Medical in collaboration with @camraredisease & @RareBeacon

Please download & share lnkd.in/e4zc5WZ6 Transition has been described as “the purposeful and planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult orientated healthcare systems”.

But were their experiences planned & purposeful?

#Transition
Mar 16, 2022 • 6 tweets • 2 min read
Young people living with #RareDiseases share their experience of transitioning from paediatric to adult care in this new report created by Costello Medical in collaboration with @camraredisease & @RareBeacon

Download & share lnkd.in/e4zc5WZ6 “There is a difference between transition, which is a process and should start early, and transfer of care which is when someone becomes the responsibility of adult services.”

Liz Morris Lead Specialist Nurse in Lysosomal Storage Disorders, Addenbrooke’s Hospital