Asociación de Afectados por la Retinosis Pigmentaria de Gipuzkoa Begisare

Established in 1999, the Federación Española de Enfermedades Raras (FEDER) was founded to address the needs of individuals and families affected by rare diseases in Spain. Headquartered in Madrid, FEDER operates as a non-profit organization, legally recognized to advocate for the rights and needs of those living with rare conditions.

FEDER exists to promote the rights of individuals living with rare diseases and those seeking a diagnosis. The organization aims to improve their quality of life through advocacy, support, and the development of strategic initiatives.

FEDER supports individuals and families affected by rare diseases, which are defined as conditions affecting fewer than 5 in 10,000 people. The organization also extends its support to those who are undiagnosed but exhibit symptoms of rare conditions.

FEDER engages in a variety of activities to support its mission, including:

• Advocacy for policy changes and increased awareness of rare diseases.
• Educational initiatives to inform the public and healthcare professionals about rare diseases.
• Direct support programs for patients and their families.
• Promotion of research and innovation in the field of rare diseases.

FEDER provides comprehensive support to patients and their families through various services, such as:

• Information hotlines to offer guidance and support.
• Consultations to help navigate healthcare and social services.
• Educational materials and workshops to empower patients and families.
• Psychological support to address the emotional and mental health needs of those affected.

FEDER has successfully advocated for the inclusion of rare diseases in the global health agenda, notably contributing to the recognition of these conditions by the World Health Organization. The organization has also facilitated significant investments in research, with over seven million euros allocated to rare disease research in recent years.