Rare Diseases Course: Territorial care provision for care complexity

The Rare Diseases Territorial Centre (CTMR) of the Bari Local Health Authority, in functional communication with the Rare Diseases Coordination Unit of AReSS Puglia, represents the link between the different links of the social and health care network, i.e. between the macro-network of the regional and extra-regional National Rare Diseases Network (PRN) centres and the micro-network of the local hospital centres, departments, social and health care districts, GPs, PFCs and consultants present in the Local Health Authority.
The CTMR promotes the training and updating of the various actors involved on the topics of prevention, diagnosis, treatment and care for patients with MR and their families.
The nodes of the territorial supply chain that intercept the person with a rare disease in his or her care pathway, while maintaining the original mandate provided for by the regulations in force, have the role and function of transforming what is prescribed by the Rare Disease Centre in the Personalised Therapeutic Plan (PTP) into real care and determine the global proximity care.
In Apulia, CoReMaR has recorded a substantial activity of the helplines located in the region at the Regional Coordination Centre, the Overseas Centre and at the 6 Apulian CTMRs.
The number of requests for help registered in 2022 is about 6,000.
This shows that the network tools put in place in Apulia are a reference for users (patients, families, doctors). The organisational efficiency of the territorial hubs, designed in their articulation with the support of the Apulian association network, is the real challenge for public health in the near future. Training, to which the National Plan for Rare Diseases 2023-2026 devotes an entire chapter, is the breeding ground for the intrinsic and indispensable cultural evolution of 'care'.
Training, therefore, is a crucial aspect in the field of rare diseases, and the empowerment process of paediatricians and family doctors, of professionals and of all the other professions involved in the care processes has as its objective the correct orientation of people with suspected rare diseases and their families in the diagnosis phase, in the monitoring of the disease and its complications, up to the assessment of risk recurrence in the various family members.

The course will take place at the Rainbow Auditorium c/o former CTO
Monday, 20 November 2023 8:30 a.m. - 2:00 p.m.

Adressees:
General Practitioners and Paediatricians of Free Choice, District Rare Disease Referrers, District Home Care Referrers, District Home Care Nurses and other social and health care personnel involved in caring for people with rare diseases.