more than 3,000,000 of Spanish with a disease rare.
Federation ASEM joins the world day of rare diseases (EERR).
– today February 28 will be held throughout the world the world day of rare diseases and Federation ASEM joins this initiative of the European Organisation for rare diseases (EURORDIS) and the Spanish Federation of rare diseases (ERDF), which seek to improve the quality of life of persons suffering from an EERR.
Barcelona, February 2010. Neuromuscular diseases (MNA), with more than 50,000 concerned, constitute the largest group within the rare diseases in Spain. This commemorative date will also serve to raise awareness and educate the society in general, medical and pharmaceutical industry and Governments on the need to ensure the rights of persons living with a rare disease.
The EERR World Day celebration will focus on giving visibility to the message that the public health services must be improved in many ways to meet the needs of persons suffering from an ENM, with measures such as include palliative treatment with physiotherapy required by these patients to rehabilitation in the portfolio of services of the national system of health (SNS)indispensable for them and their quality of life.
Under the reference and research centres! theme for rare diseases Federation ASEM joins the initiative of ERDF intending to get a public health care free and tailored to the needs of persons with MNAS, reference centres and units multi-disciplinary, one claims that the ASEM movement leads manifesting since its founding 25 years ago and which today still struggling from the force as gives the Union of their 20 associations spread by the Spanish territory and more than 8,000 partners.
