Professionals from INDEPF, a non-profit organization dedicated to defending the rights of patients with rare diseases, met this morning at the Ministry of Health with Mr. César Hernández, Director General of the Common Portfolio of Services of the National Health System and Pharmacy. This meeting revolved around the disagreement shared by social entities of patients with rare diseases regarding the existing neonatal screening in our country.
At this meeting, INDEPF, the Institute for Research and Social Development of Rare Diseases, presented to this institution a draft that it has been developing in recent months on neonatal screening in Spain and its lack of equity throughout the territory. Mr. César Hernández expressed agreement with this action and communicated the need to reach agreements and reach a consensus not only with the Autonomous Communities but also from the Ministry itself, in order to unify the so-called “heel prick” test.
This year, investment in possible improvements in neonatal screening should be one of the premises in terms of health policies. Thus, INDEPF has recognized that if patients are not the protagonists of these types of actions, initiatives such as unifying screening will not be successfully implemented.