Project Title: National Helpline for Rare Diseases (Telefono Verde Malattie Rare – TVMR)
Duration of the project: From 2008 – ongoing
The Italian National Helpline for Rare Diseases (Telefono Verde Malattie Rare, TVMR) was created to provide content and tools to promote the knowledge, the best practices and the empowerment processes concerning rare diseases, through a personalized specialist support. TVMR represents an institutional source of centralised information at national and international level.
The helpline (phone 800.89.69.49 – Monday to Friday: from 9:00 am – 1:00 pm) offers a free public service throughout the national territory – from fixed and from mobile phones. Citizens and Resident Aliens Abroad can use the e-mail address firstname.lastname@example.org.
Deaf people can access the counselling service through a dedicated e-mail address: email@example.com
– provide accurate and up-to-date information;
– guide citizens and professionals within the national network of rare diseases, promote access to health and social services favouring the knowledge;
– support processes of procedures of simplification in the social filed;
– improve the knowledge on rare diseases, strengthen the public recognition and social value;
– develop and improve the methodologies for the international sharing of rare disease information (to regional and local level, but also between institutions and organizations of patients);
– support primary and secondary prevention interventions aimed at the general population for the promotion of knowledge and awareness on specific issues (eg prevention of some congenital malformations and NBS);
– support the National Health Service and the Ministry of Health. Flexible to the emergent needs connected somehow to the rare diseases (RD) field, TVMR connects with the main reference bodies inside and outside the ISS to meet the demands of citizens (eg. Stamina method, teratogenic effects of Zika virus etc)
Method & activities:
The TVMR team operates according to the principles and techniques of telephone counseling. This technique – while responding to people’s information needs – aims at stimulate the recognition and use of the individual’s resources through the creation of a space for listening and reflecting.
To achieve the goals, TVMR team carry out multiple activities, some of which are related to the helpline service, different other not strictly related but originated from it.
Patient empowerment: Is promoted a number of activities aimed at provide not just theoretical ideas but also practical support for the needs expressed by patient organizations. Among the training initiatives, the most significant are:
– “Open day on rare Diseases”. The objective of these regular meetings is to provide opportunities for discussions and dialogue on emerging issues relating to rare diseases. Each “Open day” promotes always different topics, initiatives and / or insights, such as registers of disease, school and work inclusion, the needs of family caregivers and siblings, patient’s rights etc.
– Planning and implementation of training courses “with and for” patient associations aimed at patients, professionals and other multiple stakeholders at national and international level.
Information and awareness initiatives: The main tool is helpline, but this area includes also: a) organization of public events (eg talk shows, concerts and conferences); b) lectures, oral and poster reports at conferences and workshops; c) elaboration of articles, reports and informative material (eg “Protection and legal rights for disabled people. From constitutional rights to further legal claims”; d) update of the associations’ database on the CNMR website; e) narrative medicine initiatives; f) primary and secondary prevention campaigns; g) management of TVMR social network pages (twitter and facebook).
Collaborations and networks in support of the citizen:
At national level, the Italian National helpline has promoted an initiative to strengthen collaboration between institutional telephone services, optimize the flow of information and improve support for people with rare diseases, their families and the professionals involved. The Italian Network of Listening & Information Centers on Rare Diseases (R.I.C.A.Ma.Re), coordinated by TVMR.
At international level, TVMR is a member of the European Network of Rare Diseases Helplines (ENRDHl), promoted by EURORDIS – European organization for rare diseases, to improve and guarantee the quality of services offered to citizens, share experiences and information among the helplines around the Europe and promoting shared tools.
Institutional activities: The researchers of TVMR a) contribute to elaboration of the contents about rare diseases on the ISSalute website; b) elaborate opinions, parliamentary questions and question time; c) provide scientific and technical support to the activities of the Ministry of Health.
Research: The TVMR team collaborates on projects and studies: a) to measure the Quality of Life of patients and their carers, b) to learn about the information needs of citizens (patients and caregivers) and health professionals.
European projects. At European level, the team participates in some important projects such as EUROPLAN (www.europlanproject.eu), for the development of national plans for rare diseases and the Joint Action “Rare Disease Action. Data and Policies for Rare Diseases ”, “European Joint Programme on Rare Diseases” etc.
The impact on the NHS and on citizens’ quality of life are several, as the data collected from TVMR offer a snapshot of the information needs of citizens, providing demographic, clinical, and social information of people with RD, useful to optimize the health and welfare strategy on central and local level.
The main expected outcomes of the project are expected to:
– improve the quality of information provided to citizens, guaranteeing uniform responses throughout the national territory;
– help to reduction of inequalities in access to health care, medical treatment and social services, promoting an integrated care system in order to enable better coordinated and more continuous care;
– reduce the stress of the individual and the costs of the NHS (less unnecessary healthcare mobility, targeted and correct services, etc.), promoting a more active and informed participation of patients in diagnostic and therapeutic choices;
– expand the functionality of the helpline by exploiting its full potential. For example, obtaining the recognition of institutional helpline also for other realities close to the relevant area (for example, the National Rare Tumor Network, etc.).
Department/Center: National Center for Rare Diseases
Project website: https://www.iss.it/?p=171