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KNOW THE FOUNDATION

KNOW THE FOUNDATION

Who we are, what we do, why we do it.
Come in and meet us.

The Foundation

KNOW THE DISEASE

KNOW THE DISEASE

CMD caused by deficit in Collagen VI is a rare and desenerative disease that currently has no cure.

The Disease

COLABORATE

COLABORATE

Every gesture counts, and your help is vital.
Discover all the ways you can collaborate.

Colaborate

COLLAGEN VI Meeting 2022

COLLAGEN VI Meeting 2022

All the sessions of the I Scientific and Family Meeting of CMD for Collagen VI deficit organized by the Noelia Foundation

Collagen VI Meeting

Give Him Strength, Give Him Life!

Know
Fundación Noelia

We are a non-profit organization that represents and welcomes people affected by Muscular Dystrophy due to collagen VI deficiency and their families. Our mission is to give visibility to this disease and those who suffer from it, and ensure that it continues to be investigated here and outside of Spain.

KNOW OUR STORY

PATIENT REGISTRATION

We believe that it is important that the registry be worldwide,
for better coordination and use of resources.

Give him strength,
Give him life!

Day-to-day of the foundation

FN 2023 objective: €237,000 for research

We need your help! It all adds up! These funds will make it possible to…

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$12,500 to continue supporting research

Fundación Noelia makes the second contribution of $12,500 to the project led by Dr.Bönneman's team…

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€173,853 invested in research in 2022

Closing the year it is time to do the numbers and see what this 2022…

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Noelia Foundation is part of EURORDIS

Since last November 2022, Fundación Noelia has been part of EURORDIS, which allows us to…

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News and Events

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Implication

Research Projects

PERSONALIZED MEDICINE THERAPIES FOR CONGENITAL MUSCULAR DYSTROPHIES

PERSONALIZED MEDICINE THERAPIES FOR CONGENITAL MUSCULAR DYSTROPHIES

Development of advanced molecular diagnostic methods for the accurate diagnosis of congenital muscular dystrophies and novel gene therapies for the treatment of collagen VI deficiency.

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DEVELOPING TWO RNA DIRECTED APPROACHES TO TREATING THE RECURRENT GLYCINE VARIANTS P.G284R AND P.G293R IN COL6A1

DEVELOPING TWO RNA DIRECTED APPROACHES TO TREATING THE RECURRENT GLYCINE VARIANTS P.G284R AND P.G293R IN COL6A1

Chemical engineering of therapeutic siRNAs and use of circular RNA guides.

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EVALUATION AND DEVELOPMENT OF PERSONALISED THERAPIES FOR COLLAGEN VI-RELATED MYOPHATIES

EVALUATION AND DEVELOPMENT OF PERSONALISED THERAPIES FOR COLLAGEN VI-RELATED MYOPHATIES

Develop and validate an evaluation method and design and evaluate different nucleic acid therapies.

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Follow Us!

Noelia Foundation official song

¡Dale Fuerza,
Dale Vida!

 

“Dedicated to the History of Noelia Foundation and all Collagen VI families”

From the singer-songwriter, José Luis Caballero. November 2018

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