The Institute of Research and Social Development of Rare Diseases (PocoFrecuentes) has held a meeting with Ms. Carmen Picazo, provincial deputy of Cs in Albacete, in what has been the first meeting that PocoFrecuentes will have with different political parties to propose issues regarding the request of patients with rare diseases. The PocoFrecuentes has launched […]
The members of the PocoFrecuentes team, a non-profit organization based in Campo de Criptana and the San Carlos Clinical Hospital in Madrid, have decided to hit the streets to convey their solidarity work and the needs of patients with rare diseases to the public. The chosen location was the Los Invasores flea market, located in
The Institute for Research and Social Development of Rare Diseases (PocoFrecuentes) met today with representatives of the regional PSOE in Castilla La Mancha to express their concerns about the difficulties faced by patients with rare diseases and the current situation of the associations that help this group. The meeting, attended by Carmen Mínguez, a senator
Professionals from PocoFrecuentes, 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
D. Jesús Ignacio Meco, president of PocoFrecuentes, met today with Dña. Rosa Romero, president of the Health Committee of the Congress of Deputies, to discuss a proposal for a comprehensive approach to rare diseases. This proposal aims to guarantee the rights of patients and equitable access to healthcare treatments regardless of their place of residence.
PocoFrecuentes is rehabilitating the Attention Center for patients with rare diseases to include two new consultation rooms and a training room and event hall. The Mayor of Campo de Criptana, Santiago Lázaro, visited PocoFrecuentes’s Center for Rare Diseases Patients Care, which is currently under renovation to include two new consultation rooms, a training room, and
