There are 6 apps in Rare diseases


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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)

ITP Support App

ITP Support App
developed by Nev Watson


Allows networking with other people like me / Family / FriendsSupport to deal with symptoms/disabilitiesInformation

English

Cost: Free
Provides information about immune thrombocytopenia (ITP), a rare disorder,  and the UK-based ITP Support Association.
“It contains basic information about immune thrombocytopenia (ITP) for newly-diagnosed patients, and for parents of children with ITP. Carries a list of treatments, with information so that patients understand more about the treatment they are being offered, and information on what to do in various situations—nosebleeds, at the dentist, etc. Gives easily-accessible information in lay terminology, including information that can be shown to the dentist, or to Accident and Emergency (A&E) healthcare professionals in an emergency. It is the only mobile phone and tablet app for immune-thrombocytopenia sufferers and their families and health professionals to follow.” ITP Support Association, UK | PatientView survey, November 2013


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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