The Institute of Research and Social Development of Rare Diseases (INDEPF) has held a meeting with Ms. Carmen Picazo, provincial deputy of Cs in Albacete, in what has been the first meeting that INDEPF will have with different political parties to propose issues regarding the request of patients with rare diseases.
The INDEPF has launched its strategy to raise awareness of rare diseases with Ms. Carmen Picazo, a political figure who has been supporting and defending the Institute’s initiatives whenever issues related to health and these diseases need to be addressed. In this meeting, Mr. Jesús Ignacio meco, director of INDEPF, informed Picazo about the little attention that the group received during the tough months of the pandemic, as well as the invisibility that this fact brings. The mismanagement of economic and therefore, healthcare resources that have caused havoc in the care directed towards patients with low-prevalence diseases in public healthcare was also discussed. This debate led to a situation that INDEPF has been denouncing since its inception: neonatal screening in Spain and its inequalities among autonomous communities. While more than 80 rare diseases are screened in the US, the Spanish Ministry of Health only mandates screening for 7.
After the meeting, INDEPF organized a meeting between the Ciudadanos CLM representative and an affected patient. The purpose of this meeting was to bring these cases closer to political leaders, as they have the privilege of representing the rare disease community and fighting for their rights.