We were very proud to present a poster on our nurse-delivered caregiver support program for Hunter syndrome at the 2019 Connect For Care, an international meeting for rare disease nurses.
Hunter syndrome is a very rare inherited metabolic disorder, which can cause a number of serious symptoms, including delayed development, enlarged internal organs, joint stiffness and aggression. It can’t be cured so treatment focuses on symptom management. Caregivers of children with Hunter syndrome face many challenges, which may result in ongoing distress, in turn affecting adherence to their child’s treatment.
The program works with caregivers’ unmet need for support. It provides the specialist nurses who administrate infusion therapies to affected children with materials, training and ongoing supervision, helping them to deliver structured emotional support to the caregivers they work with.
We’re very proud of this innovative project and would like to thank everyone who made it happen, especially the poster authors – Lina Eliasson, Christina Jackson, Anna O’Sullivan and Ilaria Piubelli, as well as our project sponsor, Takeda.