The “Opitz C Syndrome Association” is a non-profit organization, created in 2006 and registered in the Register of Associations of the Generalitat de Catalunya.
Since its creation, our main goal has been to promote research on this severe condition as well as contributing to a better understanding of it.
We have attended three Family Conferences that have been made in the US (years 1998, 2002 and 2006).
We have participated in several studies of Doctor Robert Foundation (Barcelona) to analyse the needs of the patients with rare diseases and their families, as well as the associations that represent them.
Our association is member of FEDER (Spanish Federation of Rare Diseases).