The Spanish Federation for Rare Diseases (ERDF) today met with the Minister of Health, Social Services and Equality, Ana Mato and the Secretary of State for Social Services and Equality, Juan Manuel Moreno Bonilla
Copay, Centers, and Units of Reference Services and the future of the National Strategy for Rare Diseases have been some of the main issues that have been addressed
The Spanish Federation for Rare Diseases (ERDF) today met with the Minister of Health, Social Services and Equality, Ana Mato and the Secretary of State for Social Services and Equality, Juan Manuel Moreno Bonilla to move proposals that address the needs of people with rare diseases.
Specifically, from ERDF has submitted a proposal for waiver of the copayment for those diseases that are being severely affected by the consequences of Royal Decree Law 16/2012.
During the meeting, who fled Juan Carrión, president of ERDF and Claudia Delgado, director of the entity is also discussed other topics such as the designation of the Centers, Reference Services and Units (CSUR) for rare diseases and the future of National Strategy for Rare Diseases is currently underway.
It has also addressed one of the priority issues for families with rare diseases, access to treatments and therapies, as well as improved access to orphan drugs in the NHS.
For the Federation "the meeting was very positive and opens the way to work very specific measures to be put in place from the Ministry of Health for the quality of life for families.
The Minister has shown interest to start with the immediacy major development proposals raised. "Said Carrion.
In addition, and as explained by the president of ERDF "from the Federation we will send detailed technical reports and where priorities are identified from the associations, in line with the topics discussed during the meeting today."
The Federation welcomes this meeting as a starting point for dialogue and adequate for the work necessary to people with rare diseases.
"We will monitor all commitments and initiatives taken by the Ministry of Health and we are at your disposal to continue working on improving the quality of life of families."
Ana Mato, open the V National Congress on Rare Diseases in Totana
The Health Minister Ana Mato, in its commitment to families with rare diseases, will open next October 26th the V National Congress of Rare Diseases to be held in Totana (Murcia).
The aim of the conference, which is now in if fifth edition, is to standardize and raise awareness about the situation of people with rare diseases.
To this end, the meeting host and affected many families with rare diseases, as well as leading experts in the field.