In 2014 The Cure & Action for Tay-Sachs (CATS) Foundation was a winner of the Genzyme Patient Advocacy Leadership (PAL) Awards which has enabled the charity to develop and build the eAcademy for Tay-Sachs and Sandhoff Disease app. The app has been designed for parents and caregivers of individuals with Tay-Sachs or Sandhoff disease and includes information on symptom management, practical advice for a carer and information on the diseases. Each section contains interviews with families who have been a carer for a child affected by Tay-Sachs or Sandhoff disease.
The eAcademy app
The app was launched in 2015 and has been a key resource in on the community. It has empowered families by enabling the to hear stories from other families who have shared their experiences across a variety of topics.
The app has ensured that families have access to advice from other people who have been through similar experiences.
Rationale
We know that families want to hear from other people impacted by Tay-Sachs and Sandhoff
Goals
We want to empower families and to give them an opportunity to share stories.
Next steps
The eAcademy app has been translated into other languages and we will explore launching in new regions.
