SUPPORT TO NEWBORN SCREENING (NBS) FOR SCID
We support the universal implementation of Newborn Screening (NBS) for SCID in Spain. In Catalonia it is already ongoing since January 2017 and more that 70,000 newborns have already been screened.
We support the universal implementation of Newborn Screening (NBS) for SCID in Spain. In Catalonia it is already ongoing since January 2017 and more that 70,000 newborns have already been screened.
The project aims to get an earlier diagnosis of PID in primary care centers through a computerized diagnostic algorithm and manage a better coordination with the reference centers in PID.
Expert psychological support is offered to children with a PID and their families in a suitable environment and with the optimum material to achieve better clinical outcomes and to promote their quality of life. Special attention is given to parents of newborns diagnosed of SCID through newborn screening that may require stem cell transplantation (SCT).
We provide psychosocial care services to adult patients with IDP with the aim of achieving comprehensive and ongoing inclusion for all recipients. We work through tools that enhance the experience of the disease and coping abilities, aiming to achieve personal empowerment that enables improvements in the quality of life.