On November 26, the FN team participated for another year in the 9th Information Conference…
On February 25, a new information session was held aimed at families and affected by collagen VI, where a summary of all the activities carried out during the past year 2022 was made, in order to continue meeting the objectives of the Foundation, from the accompaniment of families and those affected, promotion of research, cooperation with other organizations, dissemination and fundraising.
Dr. Eduard Goñalons, reviewed the research projects that are currently underway, the progress made and explained in detail the objectives of these projects for the next 2 years, as well as their budget and the importance of being able to continue giving them continuity.
The collaboration of the Noelia Foundation with the CIBERER was made known, in order to continue promoting the National and international Registry of those affected.
Once again, the need for the collaboration of families and those affected was evidenced if we want CMD due to collagen VI deficiency to be a curable disease one day.
For this, families were encouraged to be part of the main FN team, and some actions were exposed, which as families can be carried out.