The Spanish Federation of Rare Diseases -FEDER- is an independent, non – denominational, non – partisan, democratic and participatory, non – governmental, non-profit organization with its own legal personality independent of those of its partners and with full capacity to be subject of rights and obligations for developing its goals and action plans, whose main mission the promotion of study, research and social knowledge, medical and scientific rare or rare diseases, to improve the quality of life of people who suffer as well as the defense their rights and promote all initiatives leading to this end.
The Federation shall consist of entities, non – profit, in any field, which aimed inter alia support and advocacy for those affected by rare or rare diseases.
Its activities are based, primarily, and without limitation, in the defense before the competent authorities of the rights of people with a rare or uncommon disease and their families, in promoting the participation of those affected and entities members, in promoting research and the involvement of both the professionals involved in health and social fields and institutions in the field of care for rare diseases.
The existence of this Federation aims:
-Be valid interlocutor with public and private organizations, local, provincial, regional, national, or international, with particular emphasis on the European and Latin American areas.
-Strengthen the presence and knowledge of its member institutions to society.
-Strengthen the associative network, promoting new entities rare or rare diseases -Consideration of these diseases as a public health priority.
-Promote awareness and exchange between affected, associations, professionals, institutions, involved in diseases or rare.
-Revindicate the normalization of rare or rare diseases and the integration of those affected, school level work and in their daily lives
-Promoting legislative measures for rare or rare diseases
-Contribute to the knowledge, study and care of rare or rare diseases.
-Contribute to the care, assistance and protection, both social and care of people with rare diseases.
-Promote medical, welfare, educational, industrial, residential and social, necessary and appropriate for treating people with rare diseases services.
-Promote scientific research of rare diseases.
-Create and foster care, counseling and information, both for people with rare diseases as dependents of their protection and care.
-Publicize and disseminate the psychological, social and any kind of people with rare diseases problems.
-Promote the establishment of participatory structures at regional and / or national and / or international, to enable greater and better participation of those affected by rare diseases, their families, and the associations that represent them.
-Pay special attention to those persons who, without counting on a diagnosis of a rare or infrequent disease, are under suspicion of it, and / or have medical reports reflecting such circumstance with expressions such as “etiology disease” unfiliated “or” idiopathic “or other analogous expressions with the same meaning.
To fulfill these purposes the following activities:
1. Create information services, study, planning, technical assistance, fundraising, administration and supervision of the same, that the circumstances of each case of someone with a rare disease, or collective own advice.
2. Use all lawful means of propaganda and dissemination, within reach, for disclosure of the inherent problems of people with rare disease and their families. 3. Establish partnerships with any other entities, local, provincial, regional or national, international or supranational, especially those working in the European and Latin American areas, and engaged in whole or in part to achieve a similar purpose chasing the Federation itself.
4. Interest and get volunteers to help achieve the objectives of the Federation.
5. Use whatever legal means to achieve the purposes intended
6. Articulate mechanisms necessary for participation in the Plans and Programs of Public Services, as spokespersons recognized the interests and needs of people with rare diseases and their families
7. Promote and coordinate the participation of private institutions and Public in the plans and programs to develop the Federation
8. Arbitrate and manage the resources necessary to fulfill the purposes of the Federation
9. Manage and administer the property belonging to the Federation and dedicate their performances to the aims pursued by it
10. Promote international cooperation with associations and groups of rare diseases in disadvantaged situations
11. Any incorporated er operation designed to benefit both partners as to any other eligible beneficiary who meets the conditions and characteristics required by the nature of our own ends FEDER has 12 representatives in Spanish Autonomous Communities and 50 workers on its staff