Pitt Hopkins UK are pleased to announce that we have launched the Pitt-Hopkins app for anyone who has a smartphone or tablet to use and share! We launched it on 29th February 2016, Rare Disease Day, the rarest day on the calendar!
The idea is to have everything to do with Pitt Hopkins Syndrome in one place, accessible to everyone’s fingertips. We want this to be something that can be shared with doctors, carers, teachers, friends and family so that everyone can benefit from it, to help our children.
Although this is an app for Pitt-Hopkins syndrome we believe it will be useful in parts to other rare syndromes especially those that are differential diagnoses for PTHS, like for example Angelman Syndrome.
It’s a work in progress. We welcome any suggestions that people might have. We are aiming to add the FAQs and other sections in other languages too. At the moment we have French and German and hope to add Italian soon. We hope to add a button for “medical professionals” and “ newly diagnosed ” in the future.
The app is available in IOS, android and window app stores. Simply put ” Pitt-Hopkins ” in the search on your phone or tablet app store and download the free app! Please share it with all who would like to know about Pitt-Hopkins syndrome, particularly those who might be able to share it with others searching for a diagnosis or with a family member newly diagnosed with PTHS. We hope it will raise more awareness for Pitt -Hopkins syndrome around the world. Our Beta version was in the UK so most of the stories and videos were from the UK but we are adding them from around the world all the time.
Let us know what you think!