The four municipal groups have filed a joint motion to urge the Full Council of Totana to support the demands made by FEDER for World Rare Disease Day 2016 was celebrated on February 29.
Furthermore, in the same proposal, it urged the Ministry of Health and the Ministry of Health, Social Services and Equality to implement the actions of regional and national levels that are specific to their responsibilities and which are reflected in the consensus of the deputy institutional manifesto .
The proposal echoed the claims contained in the official statement by the occasion of World Rare Disease Day this year is done, and most notably foster a development plan and implementation of the Strategy on Rare Diseases of the National Health System providing it with sufficient resources and ensuring coordination between the different regions.
Also it called for ensuring the sustainability of the National Register of ER, involving the CCAA, professionals, researchers, as well as other health workers in the dump data;
and promote research into rare diseases, favoring the viability and sustainability of the entities and institutions who do research in rare diseases.
Similarly, it advocates to promote training and information Rare Diseases;
and strengthen the appointment of the Centres, Services and Units Reference (CSUR), providing resources, encouraging coordination between CSUR and other healthcare facilities, as well as promoting their participation in the call for the European Reference Networks (ERNs).
It also wants to implement a model of Integral Assistance to respond to the needs of people with rare diseases, ensuring early diagnosis and harmonization of an expanded screening in all the Autonomous Communities and achieve rapid and equitable access to diagnosis and appropriate treatment in the different autonomous communities, unifying the reports and assessments and avoiding delays in decisions on financing and drug prices drugs.
ERDF aims to promote participation in employment of people with rare diseases with actions that enable them to perform their work and professional activity;
and promote inclusive education, with the involvement and training of all professionals in education.
Finally, it seeks to strengthen social services, especially those related to the attention to disability and dependence, as well as coordination of social services, health, education and employment both in the state and in the CCAA.
