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A project designed to offer medical and personal assistance to patients as they transition from childhood to adulthood. This initiative focuses on providing support to healthcare professionals (HCPs) to enhance their capacity in assisting patients during this crucial transitional phase.
During the transition from pediatric to adult healthcare services, patients experience a change in the type of support they receive and are responsible for actively managing their condition, often moving away from the familiar relationship with their pediatrician. This transition presents a significant challenge in the healthcare journey, especially for individuals with rare diseases. Healthcare professionals (HCPs) have a vital role in offering education, support, guidance, and planning to empower patients with the skills necessary to manage their illness independently. Our initiative aims to address this gap in care.
Addressing patient needs and enhancing care involves listening to these patients and generating actionable recommendations for healthcare professionals (HCPs). Additionally, providing useful tools to professionals is essential.
We created a comprehensive document with actionable recommendations for medical professionals. These guidelines can be applied directly to patient care, making the entire process more thorough while also streamlining it. In addition to the recommendations for healthcare providers, we have also included a section specifically for patients. This allows them to track and manage their progress in understanding their rare disease and assuming an active role.
The implementation of these proposals is designed to ensure that patients feel well cared for. It also aims to facilitate the work within healthcare services. By applying these recommendations, we can create a more efficient and effective healthcare environment for both healthcare professionals and patients with rare diseases.
