On World Rare Disease Day, we raise our voices to shed light on collagen VI…
The Noelia Foundation has its first delegation in Euskadi
After several months of paperwork we can finally inform you that the delegation of the Noelia Foundation in the Basque Country is now duly constituted and registered.
The opening of this first delegation represents another step in the growth of the Noelia Foundation and an approach to those affected and institutions in Euskadi.
The objective of this creation is to provide support and response to those affected in the Basque Country, as well as fundraising and the promotion of research in the territory.
The opening of this delegation dates back to the first talks in 2019, paused during the pandemic, and resumed in March 2021 with the agreement of the board of trustees for the opening of the headquarters and formalized by public deed in May 2021. Registration in the registry of foundations was carried out in March 2022 and to be subsequently registered in the registry of foundations of the Basque Country in July 2022.
This delegation will be led by Amaia Uribe-etxebarria and Gonzalo Dominguez, parents of a child affected by CMD due to Collagen VI deficiency and coordinated with the central headquarters of Camarles, Tarragona.
You can find all the documentation in the transparency section of the website: https://fundacionnoelia.org/en/the-foundation/transparency/