Press release – New App Launched to Help Caregivers of Children and Adolescents with Devastating Rare Disease

26th February 2015 – A new app has been launched to help caregivers of children and adolescents with the very rare genetic diseases Tay-Sachs and Sandhoff disease. An individual diagnosed with Tay-Sachs will suffer a relentless deterioration of mental and physical abilities. In its most common form, symptoms start around six months of age and often result in death by the age of five.

The Cure & Action for Tay-Sachs (CATS) Foundation, which provides support to families affected by Tay-Sachs and Sandhoff, has developed the new app for caregivers to access advice and information about the diseases and how best to manage symptoms. There is currently no cure for Tay-Sachs and Sandhoff.

Daniel Lewi, Charity Director of the CATS Foundation said: “These are incredibly rare diseases with fewer than ten children born with Tay-Sachs or Sandhoff in the UK each year. Families can feel extremely isolated and we hope that an app that people can use wherever they are will make a real difference to the community and become a key tool for carers in the UK and abroad.”

The app has been designed to work on various mobile device platforms and contains interviews with families affected by Tay-Sachs and Sandhoff disease about the role of being a carer. There has also been input by the healthcare professionals who support people affected by these rare diseases and the app will continue to evolve where there are plans for regular updates covering different subjects relating to the diseases.

Deborah Alford, whose daughter Isabella was diagnosed with Tay-Sachs at only three years old, said: “Caring for a child with Tay-Sachs can be quite complex and revolve around medications, treatments and feeds. Every child is different: using the experience of other families to help making informed decisions about the child’s care is key and this app would be a real help with sharing that experience.”

Case studies and photographs are available on request

Leave a Reply