The Spanish Federation for Rare Diseases (FEDER), groups more than 370 Spanish entities. They define themselves as the voice of people with rare diseases and their families. It works to defend, protect and promote the rights of the more than 3 million people with rare diseases in Spain. SSS

Non-governmental alliance of patient-driven organizations. It currently brings together more than 950 rare disease patient organizations from 74 countries. They define themselves as the voice of the millions of people in Europe who have a rare disease.