PARE0020 25 years of patients' associations of ankylosing spondylitis in spain: aceade


    loading  Checking for direct PDF access through Ovid

Abstract

BackgroundPatients' associations can provide to the ankylosing spondylitis (AS) patient all the information and support that his/her rheumatologist cannot give and that is necessary to fight against the disease having a greater quality of life (1). Patients' and families' knowledge about AS is fundamental and Patients' associations play an important role in education on disease (2). In 1991, the first association dedicated to AS in Spain, was born: ACEADE (Asociacion Cordobesa de Enfermos Afectados de Espondilitis). The Rheumatologist, Dr Eduardo Collantes, after having spent some years in several countries, brings together several patients affected by this disease, in the city of Cordoba, to create the first Patients Association dedicated to this disease in Spain. There were some associations of this kind in the UK and France, and they decided to create their own association to promote the knowledge about AS and to help the AS patients. 25 years later, there are many AS patient associations in Spain that were created following the example of ACEADE, and with the help of this pioneering association.ObjectivesThe aims of ACEADE during these 25 years has been:1) Disseminate the knowledge of the disease.2) Collaborate with medical researchers.3) Improve the quality of life of the AS patient.4) Organize and participate in scientific meetings, congresses and specialized courses.5) Advise the patients in socio-labor aspects.6) Inform associates of the advances related to the disease.MethodsSeveral activities are being carried out in the Association, some of them were exposed previously (3): educational seminars, rehabilitation courses, patient guides, social events, legal advice, employment bureau, newsletter, web page, … In order to develop these activities, we have several sources for fundraising: donations, local and regional governments, pharmaceuticals, foundations, …ResultsACEADE is formed by 415 members distributed in the province of Cordoba (Spain), although some of them are from outside this city (11%). 67% of them are men and the average age of the members is 53 years. Of these, 32% have a recognized legal disability. After ACEADE, up to 18 patient associations have been created in Spain. There is also a national organization of AS patient associations: CEADE.ConclusionsACEADE was the pioneering AS Association in Spain and has been the “mother” of others that have been appearing. Today there are associations of AS in virtually all territories of Spain, helping patients to have a better quality of life. The next 25 years appear, for our association, full of illusions, ideas and a lot of work ahead, to help in the fight against AS.ReferencesJ.L. Garrido-Castro, E. Collantes, J. Blancat, J. Roman. Fighting against spondylitis from inside: what could do a patients' association. Ann Rheum Dis 2008;67(Suppl II):683.J. L. Garrido-Castro, E. Collantes-Estevez, C. Gonzalez-Navas, L. Carmona. What is the knowledge level that ankylosing spondylitis patients have about their own disease? Ann Rheum Dis 2013;72(Suppl3):141.J.L. Garrido-Castro, B. Martos, E. Collantes, J. Blancat. Rheumatic patients' associations in spain: organization, fundraising, activities and relationship with health professionals. Ann Rheum Dis 2010;69(Suppl3):754.Disclosure of InterestNone declared

    loading  Loading Related Articles