As a rare disease not only affects the individual but the whole family, we recognise the important role of caregivers and the patient groups that support them. Over the past few years we have engaged with the community to learn more about the issues facing rare disease caregivers to better understand what role Genzyme could play in supporting their needs.
In 2014 we supported Caregivers Action Network (CAN) in the development of an online resource tailored to rare disease caregivers. In addition, we hosted two “Caregiver Resilience Building” workshops with patient group leaders in Europe facilitated by Vanessa King, an expert on positive psychology and resilience, as well as a board member of the charity Action for Happiness. Following these workshops we received such positive feedback on the simple tools Vanessa introduced that we decided to share them more broadly through Genzyme Rare Community.
So it gives us great pleasure to announce that Vanessa will be a guest blogger on GRC! Over the course of 2015 she will share a number of different ideas and activities which have all been scientifically shown to boost wellbeing and resilience. We are excited about this unique collaboration and we hope that you will find this blog series a helpful resource to support you and your work within the community.
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