The Regional Plan for Rare Diseases defines the organization of assistance for people with rare diseases in Lazio.

The Plan provides:

• the organization and governance of the Network;

• the connections between reference centers and territorial services;

• the methodology for formulating Diagnostic Therapeutic Assistance Pathways;

• the reference persons and the care/administrative pathways that facilitate access to care for the person and their caregivers.

The Plan is based on a holistic approach that accompanies the person through all stages of the journey:

• from health promotion to early diagnosis;

• from taking charge to care and follow-up;

Multiple specialists and professionals are involved for a more effective multidisciplinary approach.

The Regional Coordination Center for Rare Diseases supports the healthcare offer at the regional level in monitoring and programming activities. It is composed of:

• professionals from hospital centers for rare diseases (COMR);

• regional staff;

• representatives of patient associations.