February 29, International Day of Rare Diseases

On World Rare Disease Day, we raise our voices to shed light on collagen VI congenital muscular dystrophy and all rare medical conditions.

At the Noelia Foundation we participate in different events to make the disease visible:

II Conference on Minority Diseases, at the 12 de Octubre Hospital in Madrid.

Maria, mother of a ColVI sufferer, and representing the Noelia Foundation, participated in these sessions that took place at the 12 de Octubre Hospital in Madrid.

They explored the applications of artificial intelligence in the care of patients with rare diseases and analyzed the latest developments in rare cardiological, neurological and oncological diseases. Improving care for those who suffer from these pathologies and the importance of their visibility was also discussed.

It was a multidisciplinary and collaborative day, a day to contribute to progress in addressing rare diseases!

CEIP Eduardo Sanchiz, in Tarazona de la Mancha, Albacete

Francisco José, Beltrán’s brother, affected by this disease, took advantage of the International Day of Rare Diseases to make his classmates aware of the disease that his little brother suffers from.

He did it phenomenally, doing his bit to make it more and more known.

Unicas SJD, Sant Joan de Deu Hospital in Barcelona.

María and Arturo (two collagen VI children), representing the Noelia Foundation, participated yesterday in the ceremony to lay the first stone of the Únicas SJD center, at the Sant Joan de Deu Hospital in Barcelona. A monographic center for the care and research of rare diseases.

The Únicas SJD center is expected to begin its activity at the end of 2025 and will become, together with the Sant Joan de Déu Barcelona Hospital, one of the largest campuses in the world dedicated to rare diseases. This complex will concentrate assistance and research, becoming one of the largest in the world.

One more step towards a more hopeful future for those who suffer from these diseases!

Report with Noelia Canela and Adriá on Canal 21.

In this report, Noelia Canela reviews the DMC due to Collagen VI deficiency, the beginnings of the foundation 8 years ago, the research and the importance of private support from foundations like ours and what day-to-day life is like of the illness at the hand of Adriá.