on rare diseases
The document of recommendations for the search for solutions in the field of rare diseases aims to establish active and permanent platforms that allow, jointly, to find effective solutions between the competent public authorities, political representatives and all groups belonging to the field of rare, minority or infrequent diseases. Together and by joining forces, we will be able to defend, promote and improve the quality of life of the more than 3 million people affected by these diseases in Spain.
This project has been developed jointly by FEDER and AELMHU and more than 70 patient organisations, professionals and the pharmaceutical industry have joined the project.
which the project covers:
Promote a Plan for the development and implementation of the Strategy on Rare Diseases of the National Health System, providing it with sufficient resources.
Promoting general awareness of Rare Diseases
Promote Research in Rare Diseases, favoring the viability and sustainability of companies researching in rare diseases
Strengthen, guarantee and streamline the procedure for designating Reference Centres, Services and Units (CSUR).
To implement a comprehensive care model that responds to people with rare diseases, ensuring early diagnosis and the harmonisation of extended screening in all the Autonomous Communities.
Achieve rapid and equitable access to diagnosis and treatment with appropriate medicines in the different Autonomous Communities, providing the necessary funding for this purpose.
Apply the scientific and clinical recommendations from the Therapeutic Positioning Reports in all areas of health management (national and regional).
Avoiding delays in decisions on financing and pricing of medicines
Promote the participation in employment of people with rare diseases with actions that enable them to carry out their work and professional activity.
To promote educational inclusion, with the involvement and training of all professionals in the educational field.
Strengthen social services, especially those related to disability and dependency care, as well as the coordination of health, social, educational and employment services at both the national and regional levels.
What do the signatory
TO THE GOVERNMENT
To include all related groups in the Monitoring and Evaluation Committee of the National Health System's Rare Diseases Strategy.
Ensuring a stable, agile, predictable and transparent regulatory, administrative and policy environment.
That administrative procedures are clearly defined, so that companies researching and developing treatments can continue to bring benefit and quality of life to these patients, while maintaining their commitment to R&D&I.
To the PARTIES and
To the political parties that form part of the Spanish Parliament, to create a Permanent Joint Commission (Congress-Senate) on rare diseases to address the problem of rare diseases in our country.
Policy makers to create specific budgets for the treatment of patients affected by rare diseases in order to mitigate situations of inequity and differences between regions.
The mechanism for compensation between communities should be transparent, agile and effective, and difficulties and delays in access to these medicines should be made known so that they can be solved.