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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

Fundación Noelia has organized the I Collagen VI International Research Summit in San Sebastián (Spain), marking a milestone by being the first dedicated exclusively to Col6 in Europe.

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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

February 29, International Day of Rare Diseases

On World Rare Disease Day, we raise our voices to shed light on collagen VI…

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Fundación Noelia has received support from the “la Caixa” Foundation, through CaixaBank

Noelia Children's Foundation against congenital muscular dystrophy due to Collagen VI deficiency has received support…

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New contribution to Dr. Bönnemann’s team

Thanks to you, Fundación Noelia, achieves one of its goals for 2023 and donates $120,000…

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New contribution to research

This month of July 2023, from Fundacion Noelia we have delivered the €38,095 that allow…

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News and Events

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Implication

Research Projects

BIOMARKER RESEARCH FOR COL6-RELATED DYSTROPHIES

BIOMARKER RESEARCH FOR COL6-RELATED DYSTROPHIES

Search for reliable biomarkers that allow evaluating the progression of the disease and the response to new treatments.

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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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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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