On February 29, it was celebrated as a "rare" date, World Rare Disease Day, but it is not something to remember one day each year (non-leap years is celebrated on February 28) and then forget, because although its incidence in the population is low, the sick are not invisible.
No less than three million people in Spain have rare diseases, many without treatment, and their needs must be made visible to improve the quality of life of the sick. And if we talk about needs, we want to talk specifically about what do parents of children with rare diseases ask for an easier life. These are some of them:
The approval of a Royal Decree on Urgent Measures to guarantee comprehensive care for rare diseases in different areas: specialization, access to medicines in all Autonomous Communities, mobility between referral centers ... (Change.org)
Reset of the state funding to ensure treatment and specialized health care of people with rare diseases (Change - ERDF)
Investing in research: Spain has reduced 50 percent of research items in recent years. Without it there is no possibility of finding treatments.
Accredit reference centers for these diseases. We want to be treated with the same guarantees as when we suffer a frequent illness. (Change)
Specialized protocols for get faster diagnoses, and thus avoid long processes that cause anguish, known as "medical pilgrimage."
Establish emergency action protocols, in primary and specialized care, so that medical professionals know and refer patients to different reference centers.
Equal opportunities for people with rare diseases, as well as guarantee social, health, labor and educational equity.
Improve palliative care: a multidisciplinary team that provides 24-hour home assistance.
