AHEDYSIA

Founded in November 1999, the Asociación Humanitaria de Enfermedades Degenerativas y Síndromes de la Infancia y Adolescencia (AHEDYSIA) was established by a group of mothers whose children were affected by neurodegenerative diseases and rare syndromes. The organization is a non-governmental, non-profit entity with its headquarters located in Villajoyosa, Alicante, Spain.

AHEDYSIA is dedicated to improving the quality of life for children affected by neurodegenerative diseases and rare syndromes. The organization aims to support research into these rare diseases, raise societal awareness, and advocate for the removal of architectural barriers in public spaces and transportation.

AHEDYSIA supports children with neurodegenerative diseases and rare syndromes, as well as their families.

The organization engages in various activities, including:

• Advocacy for research and awareness
• Educational programs
• Direct support services

AHEDYSIA provides a range of support services to patients and their families, such as:

• Physiotherapy and hydrotherapy sessions
• Psychological support services
• Early stimulation programs
• Animal-assisted therapy
• Self-help groups for affected individuals and their families
• Social awareness campaigns
• Medical-psychosocial workshops
• Recreational activities
• Family support and resource information

AHEDYSIA has successfully organized events such as the III Marcha por las Enfermedades Raras, which has significantly contributed to raising awareness and support for rare diseases.