Malatirari.it
This innovative web platform allows those suffering from rare diseases, or those with a suspected rare disease, to get in touch and talk with a network of UNIAMO-certified consultants, right from the comfort of their own home. This is possible thanks to a video conferencing and video consultation system involving professionals from a range of areas: doctors and specialists, psychologists and consultants, admin staff, representatives for associations of people suffering from rare diseases, people affected by rare diseases, relatives of people affected by rare diseases, people who have already gone through the experience of living with a rare disease and who - by sharing their experience - can help those who are at the start of the process.
Three main focus points
In particular, the service has three main focus points:
- - the first regards legal-administrative issues on so-called “entitlements", with two sub-areas of specialisation: the first refers purely to accessing the workplace (certifications, social benefits, Italian law no. 68/1999) and the other deals with tax relief aspects;
- - the second regards psychological support;
- - the third regards information on medical, social and health care.
Accessing the platform
Users can access the platform through their own personal account, selecting the type of service they’d like to activate and scheduling an appointment with their professional/association/representative of choice. The video conferencing system will make it possible to speak directly to the person selected. Direct contact is a way to make people feel welcome and close to others, which is of crucial importance for individuals such as those suffering from rare diseases, who often feel disoriented, alone and overwhelmed by a healthcare system that isn’t always easy to approach. Video consultations can also be held remotely with foreigners and deaf people who use Italian sign language (LIS), as the platform will also include an innovative online video-interpreting service, in addition to an augmentative and alternative communication expert. This simplifies communications, providing access to those who have difficulties using the more common communication channels.
An open community
This project will enable those facing life with a rare disease to really feel like part of an open community, a community that’s ready to welcome them, listen to them and provide support for their various needs. What's more, the interpreting service provided, covering a number of languages, also opens the network up to international experts, respecting European guidelines on rare and complex diseases. In fact, the European Reference Networks (ERN) involved with caring for these diseases have been involved, putting patients in contact with experts even from abroad. European Patients Advocacy Groups (ePAGs) form part of the community, making it easier to gain access to this important system wherever possible.
RINGS is an experimental project, but the innovative platform used can open the door to numerous other possibilities, improving the efficiency of traditional web tools and creating an active and interactive community that’s able to meet the needs of sufferers of rare diseases in an increasingly effective way.
