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
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“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
Liz Morris Lead Specialist Nurse in Lysosomal Storage Disorders, Addenbrooke’s Hospital
What needs to improve?
1️⃣ Strengthen the coordination of transition processes for young adults with rare diseases
1️⃣ Strengthen the coordination of transition processes for young adults with rare diseases
2️⃣ Ensure that the transition process begins early and allows flexibility for individuals with complex rare diseases
3️⃣ Invest in the development of age-appropriate services for teenagers and young adults
4️⃣ Hold services accountable for their approach to transition
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