skip to Main Content

Noelia Foundation is part of EURORDIS

Since last November 2022, Fundación Noelia has been part of EURORDIS, which allows us to have a voice and include ColagenoVI in its forums and workshops.



EURORDIS is a patient-driven, non-governmental alliance of patient organizations and individuals active in the field of rare diseases, promoting rare disease research and the commercial development of orphan drugs. It represents 687 rare disease patient organizations in 63 countries becoming the voice of 30 million patients affected by rare diseases across Europe.


What does it mean to be part of EURORDIS?

Being part of EURORDIS means being part of a strong and growing rare disease community. It will allow us to connect not only with other rare disease patients but also with policy makers, clinicians, researchers and industry through the various EURORDIS initiatives.

It will allow us to train to be a Patient Expert and to be able to participate and shape European policies on rare diseases, either through the ERN (expert groups on specific diseases, in our case muscular diseases) or directly by participating with the European Medical Agency.

And above all, it allows to increase the knowledge of our disease in the community of rare diseases in general. Through webinars, courses and different events we have direct access to all the knowledge accumulated in EURORDIS on medicines for rare diseases, health and social care, research and legislation.


Who will represent us?

Noelia Foundation will be represented at EURORDIS by Maria Borrell. Maria is Maria’s mother, affected by Muscular Dystrophy due to collagen VI deficiency. She is a Doctor of Medicine from the University of Barcelona and is currently a senior researcher studying cardiovascular diseases at the Hospital de Sant Pau in Barcelona.

He is a Patient Advocate for neuromuscular diseases in EURORDIS and has participated in several Scope Actions to establish Pharmacovigilance collaborations in Europe. Since 2018, he is part of the pool of Expert Patients of the PARADIGM Project (Patients Active in Research and Dialogues for an Improved Generation of Medicines) funded by the European Community. This program allows the structured participation of the patient in three key points for the development of medicines: the establishment of research priorities; the design of clinical trials and the first dialogues with the different Health Departments of the different European countries.

Back To Top