D. Jesús Ignacio Meco, president of INDEPF, 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.
This meeting aims to be the starting point for establishing working meetings with all parliamentary groups, to explain the real needs of patients and the comprehensive care of these diseases. In this case, INDEPF has conveyed to the president this existing inequities in both research and diagnosis of these diseases. As a fact, the disparity of criteria that we have throughout the national territory regarding neonatal screening, or commonly known as heel prick test.
During the meeting, the possibility of carrying out a Non-Legislative Proposal that could lead to a Comprehensive Law for the Approach to Rare or Uncommon Diseases in Spain was discussed. It should be noted that this will require political and societal support to achieve this objective. Dña Rosa Romero agreed with INDEPF on the need to consolidate equity criteria and parlamentary availability to work for patients and their families with rare or uncommon diseases.
