Asociación Europea contra la Leucodistrofia – ELA España
Centro Multifuncional La Rambla
Avenida de los Príncipes de España 20, 2ª planta.
28823 Coslada (Madrid).
The Spanish Association Against Leukodystrophy, created on 10 March 2001, has twinned with the European Association Against Leukodystrophy - ELA Spain and has been renamed ELA Spain to fight hand in hand for the same objective: To bring out those affected by the disease of anonymity and isolation, creating a social network of support between families and jointly promote the means to develop research in Europe.
- Mission: Non-profit association that promotes the quality of life of people with leukodystrophy and their families, through a comprehensive intervention of all agents involved.
- Vision: To be a state reference in leukodystrophy, which through the promotion of a network alliance and realistic services, achieves comprehensive support with clear results.
- Values:
- Empathy: attitude of understanding in order to attend to our agents involved.
- Active listening: as a value oriented to the attention of people that allows us to perceive their reality.
- Commitment: to achieve our mission, pursuing the rights and needs of people affected by leukodystrophies and their families.
- Transparency: clear and accessible information addressed to all interested parties.
- Efficiency: coherence in the use of resources to achieve our mission.
Objectives
- To inform and help families affected by leukodystrophies.
- To sensitize the medical profession and the population in general.
- Contribute to the creation of a European database.
- Contribute to the European fund for medical research on leukodystrophies.
- Promote training activities and the exchange of projects, experiences and research.
- To hold courses, conferences, conferences, congresses and other information and training events.
- Any other activity that benefits the best treatment for leukodystrophy.
The team of professionals that make up ELA Spain consists of: a coordinator responsible for communications, an administrative, a psychologist and two social workers.
- Information and Guidance Service (SIO): It is a unique information service on leukodystrophies in the national territory and has two social workers. We handle all types of queries relating to leukodystrophies, as well as information on economic benefits or queries of any kind that people affected by leukodystrophy and their families may need. It is carried out throughout the year.
- Psychological Attention Service (SAP): This is the service of accompaniment, orientation and psychological attention that seeks to improve the quality of life of people affected by leukodystrophy and their families. Through this relationship of help, the aim is to stimulate and train the person as the protagonist of the process of change involved in living a leukodystrophy, by strengthening their tools and coping strategies, as well as the incorporation of some new ones that help to reduce their suffering and the risk of the appearance of psychopathological consequences. This service is carried out throughout the year.
- Second medical assessment service: We offer the possibility of obtaining a second medical assessment by our Medical Committee. The request must be made through the SIO telephone numbers. This service is available all year round.
- Special Needs Aid Programme: aimed at co-financing the cost that families incur in conventional or alternative therapies (physiotherapy, hydrotherapy, equestrian therapies, acupuncture), technical resources (wheelchairs, walkers, cranes, etc.), functional adaptations of the home or vehicle, pharmaceutical products and travel for treatment purposes. This is intended to improve access to the necessary resources for the affected, and contribute to maintaining the continuity of therapies, which entails high costs to families, which in many cases can not afford. This programme is carried out on an annual basis, with the call being made at the beginning of the year and executed throughout the year.
- What we need to know: The awareness programme includes different activities aimed at raising awareness among the general population and care groups of people with disabilities resulting from a disease of low prevalence, which due to their complexity and low incidence make them great unknown both at a general level and in the environment closest to the care of the affected. This programme is carried out throughout the year.
- National Day of Families-Professionals of ELA Spain: In these meetings we try to bring families belonging to our entity with health professionals specializing in this disease to treat novelties and advances in relation to leukodystrophies and provide families the opportunity to resolve specific doubts in a personal way. In this way, it also facilitates the expansion of the social network of families allowing to meet other people who are in similar situations and provide mutual assistance. This meeting takes place once a year.
- Charitable bazaars: These are solidarity activities aimed at raising awareness and funds. For this we have material donated by companies and associates, as well as corporate material of our entity. The main municipalities in which we carry out these activities are: Valladolid, Villatobas (Toledo), Villamarxant (Valencia),
- Solidarity sports events: such as paddle tennis tournaments, solidarity races, mountaineering routes, etc.
- 24-hour event by ELA: An event carried out in collaboration with the College of Young Guards of Valdemoro, the French Gendarmerie and the Valdemoro City Council and arising from an initial idea of the French security corps, this event takes place in the town of Valdemoro (Madrid) and takes place in the month of June. The main activity of this event is a 24-hour relay race, in which about 500 people were registered (mainly civil guards and gendarmes) and in which groups are run for a certain time. Apart from the race, the event has other activities to attract people such as solidarity bar, inflatable castles, varied workshops, musical performances, etc..
ELA Spain has a close relationship with other NGOs such as:
- ERDF
- ASEM
- FAMMA
- EURORDIS
No, and we consider that we do not have the basic and necessary means to receive an internal person.
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