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
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
App to help families with Dravet Syndrome, a rare form of epilepsy that begins in infancy.
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.”
Brings a magazine-style interface to information about research into cures for rarer, more-neglected, diseases.
List containing information about rare diseases.
“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:
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
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
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