S.M.A.R.T. Project

The S.M.A.R.T. project (Developing Assistance Models for the Rare in the Territory) was the winner of the tender of the Ministry of Labor and Social Policies “Notice n. 2/2023 for the financing of initiatives and projects of national importance pursuant to article 72 of legislative decree 3 July 2017, n. 117 and subsequent amendments - year 2023". UNIAMO is the leader of the project which will last 18 months starting from 1 June 2024.

The project partners cover most of the Italian Regions, making it possible to try to respond to the marked territorial dispersion of people with rare diseases across the national territory.

• AIdel22 APS Associazione italiana delezione cromosoma 22
• Mitocon insieme per lo studio e la cura delle malattie mitocondriali ODV 
• A.B.C. Associazione bambini Cri Du Chat APS 
• Fondazione Lega Italiana Ricerca Huntington ETS
• Associazione Nazionale di volontariato Cornelia De Lange ODV
• Fondazione Lega del Filo d’Oro – E.T.S. – Ente Filantropico
• Associazione Persone Williams Italia
• Associazione Italiana Sindrome di Poland ODV
• Associazione Famiglie Sindrome di Williams APS

Further support in this territorial coverage action will be guaranteed by the use of new technologies (video-conferencing systems and dedicated web platforms), especially for support and information actions for the provision of remote services and the help line to support of all people with rare diseases present in Italy.

ABOUT THE S.M.A.R.T. PROJECT
The “S.M.A.R.T.” project – Developing Assistance Models for the Rare in the Territory” - is mainly developed within the initiatives functional to achieving sustainable development objective no. 3 "to ensure health and well-being for all and for all ages" of the UN 2030 Agenda. The project idea is inspired by the framework that emerged from the IX Report on the condition of people with Rare Diseases in Italy ( July 2023) which clearly highlighted how the assistance network for people with rare diseases has made notable progress in our Country over the last 20 years, placing Italy at levels of excellence at an international level. However, the need emerges to continue a support action for the development of the system of assistance for people with rare diseases to remove the critical issues still present in some territories or with respect to some specific aspects of the processes of diagnosis, assistance, therapy and rehabilitation of people with rare disease.

Starting from these contextual elements, the project, through the work of the proposing associations and the active and participatory involvement of the various stakeholders in the rare diseases sector, intends to develop a series of interventions to qualify the management of diagnosis, treatment and assistance to people with rare diseases in the area and promote innovative forms of support for them, for their family members and caregivers also through the use of new technologies.

SPECIFIC OBJECTIVES AND MAIN AREAS OF ACTIVITY
To support a positive path of qualification of care models throughout the national territory in order to provide social inclusion for people with rare diseases, it is necessary to act on multiple fronts by promoting an integrated series of interventions aimed at achieving the following specific objectives, which correspond to the main areas of activity: 

1-  Promotion and protection of rights of people with RDs.
2 - Information and support to people with RDs, their families and caregivers.
3 - Support to rare diseases associations. 

The UNIAMO Federation, thanks to the networks of the affiliated patient associations and other stakeholders, has planned a series of actions for each of the objectives. These actions will be both advocacy towards institutional bodies and support to patient associations and  PwRDs themselves to improve their quality of life. This objective will be achieved through the activation, promotion and protection of their rights in research, bioethics, health, health and social-health and labor policies.