President dela Federation Españolade Rare Diseases (ERDF), the totanero Juan Carrion, and the director of this entity, Ancochea Alba Diaz have appeared today antela Commissionof Health and Social Services of the Senate to take stock of the implementation of the conclusions dela Ponenciade study which analyzes the special situation of patients with rare diseases.
FEDER President stressed that this appearance is an important milestone because what is supposed to update the study of the social and health needs of people with rare diseases in our country that the Senate did in 2007.
In this regard he stressed that "this hearing has allowed us to convey what the needs and our proposals to improve the quality of life of more than three million people suffering from a rare disease in Spain and their families."
After analyzing the achievements since 2007 to date, among which highlighted the adoption of the Strategy on Rare Diseases of the National Health System in 2009, the creation of the State Reference Center of Attention to People with Rare Diseases and their families in Burgos the approval of the State Register of Rare Diseases or the designation of 2013 as the Year Spanish Rare Diseases, stressed that rare diseases remain a challenge and called on to be a social and health priority.
Carrion emphasized the delay in diagnosis and difficulty of access to appropriate treatment, noting that the average from the first symptoms appearing until a diagnosis is received is five years.
Among the proposals to improve the situation of those affected, Carrión said a global approach and coordinated efforts from different areas resources and multiple strategy to respond to the most urgent needs is necessary but also that anticipates the disease, through prevention and planning.
The director of ERDF meanwhile, listed a key proposals and priority actions in the health and social sectors, which include boosting plan development and implementation of the National Strategy for rare diseases with specific budget and a monitoring committee and external evaluation;
ensure the sustainability of the National Register and the proper coding of rare diseases;
support research on rare diseases;
or promoting training and information on rare diseases, especially for professionals in the geriatric field.
Also, from ERDF aim to strengthen the centers, services and reference units;
implement a comprehensive care model that responds to people with rare diseases at all stages of their disease;
or promote equitable access to orphan drugs and health products.
Other proposals that were listed strengthening social services and especially the attention to disability and dependence;
promote labor inclusion in rare diseases and promote inclusive education.
Finally, the president of ERDF requested to make available to the Government these proposals and requested that it processed timely action to implement a coordinating body to conduct monitoring of the objectives set in the National Strategy for Rare Diseases and believed a subcommittee to address the problems of people with rare diseases.
