FEDER, the Spanish Federation for Rare Diseases, is steaming ahead. Its recent success in advocating for a national plan on rare diseases is impressive. FEDER was created in April 1999 and now counts more than 160 members covering the whole Spanish territory.
The 1978 Spanish Constitution established seventeen autonomous regions, to which the management of health services is decentralised. As a consequence, FEDER is also decentralised. Six of the autonomous regions (Cataluña, Madrid, Extremadura, Comunidad Valenciana, País Vasco and Murcia) provide local funds to FEDER, which was therefore able to create four very active branches. The Federation, the headquarters of which are located in Seville, is hoping to create more branches in the future. Having regional branches enables FEDER to work closer to patients and professionals, but also to local governments. But it also makes coordination work necessary between the various branches. To do this, and according to its action plan, FEDER is structuring itself into committees with a board member at their head.
Some activities are specific to branches (for example, studies on quality of life in Burgos, psychological and legal consultations in Seville) and others are centralised (holiday and free time programs; publishing of a magazine every three months; website development; FEDER’s Service of Information and Orientation [SIO]). SIO is a phone and internet helpline dedicated to patients and their families as well as social services professionals. Three social workers and a psychologist provide information on diseases, services available to rare disease patients, and existing support groups. FEDER is also active in raising awareness of rare diseases.
Because of the decentralised structure of the Spanish government, advocacy actions are led at both national and local levels. FEDER tries to participate in local policies to promote studies on rare diseases, registries of patients, build courses for health professionals and encourage measures aiming at improving the life of people living with rare diseases.
But it is at the national level that FEDER has been the most visible recently, with the organisation of the First National Conference on Rare Diseases, held in Madrid in November 2005. ‘The conference was a huge success,’ says Rosa Sanchez de Vega, Vice-president of FEDER and Board member of Eurordis. An extensive communication campaign was set up prior to the conference; it included press notes, a press conference, a press file, numerous flyers and documentation, as well as interviews. FEDER chose to centre the conference on the need for a National Plan for Rare Diseases. The Federation came up with a proposal for a plan along ten strategic lines (similar to the plan adopted by France early 2005). FEDER’s President, Moisés Abascal, says that ‘it will be complicated to have seventeen different health systems agree and work together, [which is why] the plan will need to define quality standards in order to ensure cohesion in the system.’ Straight after the conference, FEDER decided to strike while the iron was hot and continued its discussions with the Spanish Rare Disease Research Institute, the Ministry for Health, and the Ministry for Employment and Social Matters (which is building the medico-social centre of reference for rare disease patients in Burgos, a centre that FEDER had been advocating for for many years). ‘It is urgent we reach a political compromise to fight these pathologies,’ says Moisés Abascal. ‘Patients will keep dying while there is no concrete plan to help families affected.’
On 21 February, Ignacio del Burgo, a senator of the Popular Party, presented a proposal to set up a working group on rare diseases to give the national plan a head start. The proposal was unanimously approved by all political parties represented in the Senate. ‘We must congratulate ourselves for this huge step forward,’ says Rosa Sanchez de Vega. ‘We now need to set up the working group to gather our needs and present them to the Congress for approval.’
Currently FEDER is advocating for an Action Plan for Rare Diseases, according to the Recommendations from the Report issued by the Spanish Senate Commission, based in a study on the special situation of people living with rare diseases in Spain.
With this national plan and the Telethon project FEDER is also advocating for, the Federation has a lot on its plate. Rare disease patients in Spain can rest assured their interests are well looked after!