INITIATION OF THE SMA JOURNEY PROJECT: THE PATIENT EXPERIENCE
We are pleased to announce the initiation of our project for the mapping and costing of the journey of patients with SMA. This is a project to be implemented with the donation of Roche Hellas and Novartis Gene Therapies and had been referred to during the Annual SMA workshop held by MDA Hellas in 2021.
The purpose of this project is to create an integrated program of optimum management of the disease in Greece, based on scientific data and international best practices, that will come from the participation and the contribution of all entities involved.
The project will include the mapping of the overall journey of patients with SMA (diagnosis, availability of centers of reference, access to therapies, monitoring of disease progression, support and care), the determination of gaps in the current organization, operation and efficiency of the system compared to what have been determined at an international level as optimum standards and finally, the proposal of an integrated Action Plan in order to implement the standard care for SMA, adjusted to the particularities of the Greek Healthcare System.
Our objective is to trace and abrogate the obstacles through the standardization of the optimum care, starting with the implementation of the newborn screening to the introduction of a procedure of surveillance and assessment, ensuring the provision of high-quality healthcare and access to innovative therapies.
This project will be a National Pilot for the efficient management of also other Rare Diseases aiming at improving the quality of life for as many people as possible.
In this journey we are all companions!