Share4Rare, the European project which aims to improve the quality of life of those affected by a rare disease, has launched a new cross-sectional study aiming to help stakeholders to elaborate accurate and realistic recommendations and guidelines.
For this purpose, the collection of specific information about the impact of the rare disease on the quality of life of the patients is necessary to establish a correlation between the time of diagnosis and disease-specific symptoms.
The study referred to as Health-related quality of life in people living with rare diseases, is open to adult patients or caregivers of pediatric patients willing to collaborate.
The registry is opened! Participate before 14th February 2022!
For more information please, contact: info(ELIMINAR)@share4rare.org.