There are 11 apps in Rare diseases


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CANrecall

CANrecall
developed by Rare Cancers Australia


Support to deal with symptoms/disabilitiesSelf-monitoringInformation

English

Cost: Free

App that helps people with cancer to prepare for consultations, and record answers given. 

“Patients diagnosed with cancer are confronted with vast quantities of life-changing information at a time of great stress. They are also under pressure to communicate details of their condition and treatment to many family and friends.

 

This can be a harrowing experience and the frustration of not recalling or clearly understanding a clinician’s words during a consultation can add to patient stress and anxiety. Similarly, trying to explain the diagnosis, treatment or likely outcomes to family is difficult.

By providing a structured mechanism with which to communicate questions and to record answers, the CANrecall App uses contemporary technology to assist patients at this time of great need. It will also be particularly beneficial to semi-literate or foreign language patients as it will allow them to seek medical attention and then receive later assistance from family or social workers to better understand their diagnosis and any proposed treatment therapies. 

Patients today meet with their clinicians in a manner that is virtually unchanged in the past 100 years. This despite all the growth in technology and our understanding of patients’ psychological needs. Using both technology and professionally developed Question Prompt Lists the app will significantly improve the doctor/patient interaction and the resultant patient experience.”

Race Cancers Australia, the charity which developed the app. | http://bit.ly/2LFxO47


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

Comjuntos

Comjuntos
developed by AucaDigital with support from FEDER: Federacion Espanola de Enfermedades Raras (Spanish Federation of Rare Disease Patient Groups)


Allows networking with other people like me / Family / FriendsRemindersSupport to deal with symptoms/disabilitiesSelf-monitoringInformation

Spanish

Cost: Free

App to helps families of children with rare diseases to communicate with health professionals.

“OMJUNTOS is an app that helps families who have a child with a rare disease to deal the main communication situations with health professionals. 

The common thread is 7 challenges that invite families to overcome some of these situations, such as the day they are notified of the diagnosis, when they have a medical visit, they are given a medical report, or they must perform a medical test. 

Each challenge includes a video with real testimonies from affected families and health professionals. Text explains the situation and anticipates any doubts that may arise, and includes a basic dictionary of medical terms, and information on tips, resources and links…

… The app COMJUNTOS has involved linguists, psychologists and physicians of the Universitat Pompeu Fabra, of the Open University of Catalonia and the Area of ​​Clinical and Molecular Genetics and the Unit of rare diseases of the Hospital Vall d'Hebron, besides having the collaboration of our families.”

FEDER: Federacion Espanola de Enfermedades Raras (Spanish Federation of Rare Disease Patient Groups), which advised on the app’s development | http://bit.ly/2PdolRC


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

Dravet Dream

Dravet Dream
developed by Spanish charity Fundación Síndrome de Dravet with CEINPRO, a private training organisation


Support to deal with symptoms/disabilitiesInformation

Basque / English / Spanish

Cost: Free

App to help families with Dravet Syndrome, a rare form of epilepsy that begins in infancy.

“Dravet Dream. 
The first video game in the history of Dravet syndrome. Together with our friends from CEINPRO, we go a step further in the diffusion of Dravet syndrome. 
Now, any user in the world can download Dravet Dream, an interactive game in which the main character is always accompanied by a butterfly overcoming different challenges related to this disease. 
The game is in English, Spanish and Basque, it is free and you can download it for both Android and iOS devices.”

Fundación Síndrome de Dravet, the Spanish charity which developed the app. | http://bit.ly/2T0YkG2


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

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)

PBC Self Management

PBC Self Management
developed by PBC Foundation with mtc mobile


Allows networking with other people like me / Family / FriendsRemindersSupport to deal with symptoms/disabilitiesSelf-monitoringTrackersInformation

English

Cost: Free
App to help people with Primary Biliary Cholangitis to manage their condition.

“We are pleased to announce the release of our new and improved app, which is available free to download on Apple and Android mobile devices.

 Here’s a selection of things you can do with the new features:

  • Record your symptoms on a day-to-day basis and your biochemistry results
  • Personalise the app to you, your journey and your priorities
  • Gain full access to important information, The PBC Compendium and EASL Lay guidelines
  • View the latest information on research, patient surveys and clinical trials
  • Self-management tools that will help better manage your PBC on a daily basis.

As part of a patient community, we can drive forward progress in PBC simply by recording data on the unmet needs we face every day. With you becoming part of our international patient registry, we will be able to directly influence medial research and help pharmaceutical companies discover new treatments to help PBC sufferers.

The tools, publications, and information you record can be shared with your clinician to assist with your ongoing appointments. Everything you record will be safely stored, anonymised and protected by our digital partner MTC Media.”

PBC Foundation, the UK patient group which developed the app. | https://bit.ly/3n2RGyv


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

ThaliMe

ThaliMe
developed by Curatio, with the umbrella patient group Thalassaemia International Federation


Allows networking with other people like me / Family / FriendsRemindersSupport to deal with symptoms/disabilitiesSelf-monitoringTrackersInformation

Arabic / English / Greek

Cost: Free

App for support and networking for people with thalassaemia. 

“ThaliMe is a much needed innovative mobile program, developed and deployed to greatly aid and improve the lives of people living with thalassaemia…TIF views this innovative approach to patient care and the use of mobile technology for patient empowerment and outreach as a critical component of the overall thalassaemia care…
…ThaliMe also helps to connect the worldwide thalassaemia community members to one another and to those who care for them. Through ThaliMe, patients are linked to private, peer to peer and peer to caregiver support networks to reduce isolation and improve the patients’ sense of support.”

- Thalassaemia International Magazine, Issue 66b, page 30

Thalassaemia International Federation [TIF], the not-for-profit umbrella patient organisation with members in 60 countries which helped to develop the app. | http://bit.ly/2YQvJLt


Tags:

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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