Fundación Feder is the only non-profit organisation in Spain focused on tackling the problem of rare diseases. They affect a low percentage of the population (5 in every 10,000 people), with a direct impact on their living conditions. They are often chronic, degenerative and even cause disability, with 1 in 3 cases involving a significant deterioration in motor, sensory or intellectual functions, and with 50% of cases posing a 50% risk of being terminal. In addition, as they occur at an early age, they account for 35% of deaths of infants under the age of one year.
In this context, our goal is to represent, defend and contribute to the development and improvement of the living conditions of people affected by rare diseases, supporting medical or pharmaceutical research programmes and helping to disseminate the information that exists about these diseases.
Since our foundation in 1999, we have grown from seven to 360 entities, with 7 delegations and 12 area coordination centres, and with a presence throughout Spain. We currently have a personalised advisory service, we offer both in-person and online training, and we provide resources for entity management. We also encourage activity in the field of associations, helping to create them and supporting them in their growth.