The eAcademy for Tay-Sachs and Sandhoff Disease


Listed in: General neurological conditions  
The eAcademy for Tay-Sachs and Sandhoff Disease

Available on:



(click to download)

Supported languages:

English / French / Portuguese / Spanish

Cost:

Free

App sharing parent and carer experience of caring for children with Tay-Sachs or Sandhoff disease.

Approved by


Languages

English / French / Portuguese / Spanish

Countries of use

Any country where English is spoken.

Cost

Free

Developer

Cure and Action for Tay-Sachs (CATS) Foundation UK
(Based in United Kingdom)
http://www.cats-foundation.org

Funder

Developer, with support of $15,000 through the Sanofi-Genzyme Patient Advocacy Leadership Awards (2014)

Medical Adviser

Cure and Action for Tay-Sachs (CATS) Foundation UK

Features

Support to deal with symptoms/disabilities Support to deal with symptoms/disabilities
Information Information

Summary

The app aims to support parents and caregivers of children with Tay-Sachs or Sandhoff disease.

Including video interviews with families, the app helps parents and carers to:

. Understand more about the diseases
. Manage symptoms
. Consider equipment needed
. Benefit from the experience and advice of other parents
. Feel less isolated.

In 2014 The Cure & Action for Tay-Sachs (CATS) Foundation was a winner of the Sanofi-Genzyme Patient Advocacy Leadership (PAL) Awards. The charity was awarded a grant of $15,000 to create an app for smartphones and tablets.


Tags: Disability  ·  Health, Wellness & Care in the Community (HWCC)  ·  Medical

Reviews

Reviewer: Daniel Lewi, co-founder CATS Foundation UK, and father of a girl diagnosed with Tay-Sachs.
Review: “We hope that this app changes the way in which families affected by Tay-Sachs and Sandhoff disease are able to access information to help in their role as a carer.”

“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.”
Source: http://www.cats-foundation.org/blogs/introducing-the-eacademy-for-tay-sachs-sandhoff-disease-app/
Usage: Not specified
Weblink of reviewer: http://www.cats-foundation.org
Reviewer: Deborah Alford, mother of a girl diagnosed with Tay-Sachs
Review: “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.”


Source: http://www.cats-foundation.org/blogs/press-release-new-app-launched-to-help-caregivers-of-children-and-adolescents-with-devastating-rare-disease/
Usage: Not specified
Weblink of reviewer: http://www.cats-foundation.org

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