There are 6 apps in Rare diseases


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Duchenne A and E pack

Duchenne A and E pack
developed by Nvisage for team including patient organisations and charities such as Action Duchenne and Duchenne UK


Support to deal with symptoms/disabilitiesInformation

English

Cost: Free
App to help Accident and Emergency staff to understand the specific needs of patients with Duchenne Muscular Dystrophy (DMD)
“This vital new app gives people with Duchenne and their families and carers a way of taking all their medical information with them wherever they go.

Please download the Duchenne Accident & Emergency File app by searching for Duchenne A&E in the search box for your phone or tablet. Information can be entered via the website http://duchenneemergency.co.uk/ or directly via the app.

It is really important that everyone keeps this information up-to-date and that it is checked after every consultation. 

This project was created by Duchenne UK and Action Duchenne, Alex’s Wish, DMD Pathfinders, Duchenne Now, The Duchenne Research Fund, Harrison’s Fund, PPMD and MDUK.”
Duchenne UK, one of the team of Duchenne patient and groups in the UK that collaborated on the app. | http://bit.ly/2ENAeeI


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

HAE Attack Tracker

HAE Attack Tracker
developed by Peter Baum, while at AS&K Mercury Healthcare Communications


Support to deal with symptoms/disabilitiesSelf-monitoringTrackersInformation

English

Cost: Free
Symptom and treatment diary for people with hereditary angioedema (HAE).
"This app allows hereditary-angioedema (HAE) patients to keep detailed records of their disease-related information, including emergency and physician contacts, as well as individual attack data. “Recording and tracking triggers and symptoms of HAE attacks can be an important tool in managing this disease,” said Chief Medical Officer Dr Burt Adelman of Dyax. “Understanding the frequency and severity of these attacks can be of real value to both patients and their treating physicians.” ... Developed by a team of patient-education specialists at Dyax, along with input from HAE patients, the ‘HAE Attack Tracker’ is the first iPhone app designed specifically for HAE patients. ... The app provides a reference for patients and physicians, allowing them to monitor HAE attacks, and track a number of metrics that could help in the management of the condition." US Hereditary Angioedema Association (HAEA), USA | http://bit.ly/1dXMr8H


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

My Lupus Log

My Lupus Log
developed by User Computing Services, GlaxoSmithKline


Support to deal with symptoms/disabilitiesSelf-monitoringTrackersInformation

English

Cost: Free
Allows symptoms of lupus to be recorded, to help better manage the condition.
“Start understanding your lupus better by tracking your symptoms, recording how they’re affecting you, and sharing it all with your doctor. And let ‘My Lupus Log’ help. Available free for Android smartphones, the My Lupus Log app lets you: track your symptoms; monitor and record their impact; customise your profile; learn more about lupus; stay focused with alerts and reminders.” Lupus Foundation of Pennsylvania, USA | Source no longer available


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

Open Drug Discovery Teams

Open Drug Discovery Teams
developed by Molecular Materials Informatics Inc, Canada


Information

English

Cost: Free

Brings a magazine-style interface to information about research into cures for rarer, more-neglected, diseases.

“ ‘ODDT’ collects data on a small, but growing, number of diseases (including Chagas disease, HIV/AIDS, Huntington’s disease, leishmaniasis, malaria, Sanfilippo syndrome, and tuberculosis). The app also covers emerging topics, such as drug repurposing and green chemistry.” CheckOrphan, Switzerland and the USA | http://bit.ly/LRMmog


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

Orphanet, the mobile portal for rare diseases

Orphanet, the mobile portal for rare diseases
developed by Institut National de la Santé et de la Recherche Médicale (Inserm), France


Support to deal with symptoms/disabilitiesInformation

English / French / German / Italian / Portuguese / Spanish

Cost: Free

List containing information about rare diseases.

"Orphanet, an INSERM service, allows you to access a list of rare diseases, their description and associated resources. Consult the emergency guidelines directly. Find contact details of expert clinics and professionals. You can bookmark pages and PDFs you want to find again in one click, thanks to a dedicated feature. It is also possible to annotate some of the pages. The data available on the Orphanet app are those obtained during its last update. To access to the most recent data, and make the most of Orphanet services on your mobile, update the app regularly." Orphanet | http://bit.ly/13DhOEg


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

Treatable-ID

Treatable-ID
developed by Roderick Houben of HealtH2Media


Support to deal with symptoms/disabilitiesSelf-monitoringInformation

English

Cost: Free
Information about the diagnosis and treatment of 81 treatable rare diseases that cause intellectual disability.

Recommended by the app’s funder and medical advisor.

Treatable Intellectual Disability Endeavor in BC (TIDE BC), Canada | http://bit.ly/1jObT5f


Tags: Disability

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