{"id":20909,"date":"2022-05-25T09:44:46","date_gmt":"2022-05-25T09:44:46","guid":{"rendered":"https:\/\/fundacionnoelia.org\/?page_id=20909"},"modified":"2025-02-26T11:06:10","modified_gmt":"2025-02-26T11:06:10","slug":"inicio","status":"publish","type":"page","link":"https:\/\/fundacionnoelia.org\/en\/","title":{"rendered":"Inicio"},"content":{"rendered":"[vc_row][vc_column]
\"\"<\/div>
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\"\"<\/a><\/div><\/div><\/div><\/div>[\/vc_column][\/vc_row][vc_row remove_bottom_col_margin=”true” css=”.vc_custom_1627253976873{padding-top: 60px !important;padding-bottom: 70px !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″]
\"KNOW<\/figure>

KNOW THE FOUNDATION<\/h2>

Who we are, what we do, why we do it.
\nCome in and meet us.<\/p>\n

The Foundation<\/a><\/p>\n<\/div><\/div><\/div>

\"KNOW<\/figure>

KNOW THE DISEASE<\/h2>

CMD caused by deficit in Collagen VI is a rare and desenerative disease that currently has no cure.<\/p>\n

The Disease<\/a><\/p>\n<\/div><\/div><\/div><\/div>[vc_empty_space]

\"COLABORATE\"<\/figure>

COLABORATE<\/h2>

Every gesture counts, and your help is vital.
\nDiscover all the ways you can collaborate.<\/p>\n

Colaborate<\/a><\/p>\n<\/div><\/div><\/div>

\"COLLAGEN<\/figure>

COLLAGEN VI Meeting 2022<\/h2>

Fundaci\u00f3n Noelia has organized the I Collagen VI International Research Summit in San Sebasti\u00e1n (Spain), marking a milestone by being the first dedicated exclusively to Col6 in Europe.<\/p>\n

Toda la informaci\u00f3n<\/a><\/p>\n<\/div><\/div><\/div><\/div>[\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1645700970356{background-color: #ededed !important;}”][vc_column width=”1\/2″ css=”.vc_custom_1645699693491{background-image: url(https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2022\/02\/background-side.png?id=134) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][vc_empty_space height=”500px”][\/vc_column][vc_column width=”1\/2″][vc_column_text]\n

Give Him Strength, Give Him Life!<\/span><\/h3>\n

Know
\nFundaci\u00f3n Noelia<\/h2>\n

We are a non-profit organization that represents and welcomes people affected by\u00a0Muscular Dystrophy due to collagen VI deficiency<\/strong>\u00a0and 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.<\/p>\n

KNOW OUR STORY<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column css=”.vc_custom_1645791784831{background-image: url(https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2022\/02\/registro.png?id=215) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][vc_row_inner][vc_column_inner width=”1\/4″][\/vc_column_inner][vc_column_inner width=”1\/2″][vc_column_text]\n

PATIENT REGISTRATION<\/h3>\n

We believe that it is important that the registry be worldwide,
\nfor better coordination and use of resources.<\/p>\n[\/vc_column_text][vc_empty_space]

REGISTER NOW<\/span><\/a><\/div> [\/vc_column_inner][vc_column_inner width=”1\/4″][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1645615237643{background-color: #ffffff !important;}”][vc_column width=”1\/2″][vc_empty_space height=”200px”]
Give him strength,
\nGive him life!<\/span><\/div>[\/vc_column][vc_column width=”1\/2″][vc_video link=”https:\/\/youtu.be\/kHLxwLk-U58″][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1645616160964{background-color: #ededed !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_empty_space][vc_custom_heading text=”Day-to-day of the foundation” font_container=”tag:h2|text_align:left|color:%23000000″ google_fonts=”font_family:Montserrat%3Aregular%2C700|font_style:700%20bold%20regular%3A700%3Anormal”][vc_empty_space]
\"\"<\/a><\/div>

COL6 DAY: EVirtual Event<\/a><\/h2>
July 1, 2025<\/div>

On June 6th, the first virtual edition of COL6 DAY took place, an event organized…<\/p><\/div>

Read more<\/a><\/div><\/div><\/div><\/div>
\"\"<\/a><\/div>

New advance in the research of Congenital Muscular Dystrophy due to Collagen Deficiency VI (CMD COL6)<\/a><\/h2>
February 13, 2025<\/div>

The Fundaci\u00f3n Noelia has funded an innovative study led by researcher Virginia Arechavala-Gomeza, which takes…<\/p><\/div>

Read more<\/a><\/div><\/div><\/div><\/div>
\"\"<\/a><\/div>

Conference on Rare Disease Research Organized by FEDER<\/a><\/h2>
November 23, 2024<\/div>

The Importance of Patient Participation in Rare Disease Research This event, organized by FEDER (Spanish…<\/p><\/div>

Read more<\/a><\/div><\/div><\/div><\/div>
\"\"<\/a><\/div>

February 29, International Day of Rare Diseases<\/a><\/h2>
March 1, 2024<\/div>

On World Rare Disease Day, we raise our voices to shed light on collagen VI…<\/p><\/div>

Read more<\/a><\/div><\/div><\/div><\/div><\/div><\/div>[vc_empty_space height=”15px”]
See All<\/span><\/a><\/div> [\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row][vc_row][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_empty_space][vc_custom_heading text=”News and Events” font_container=”tag:h2|text_align:left|color:%23000000″ google_fonts=”font_family:Montserrat%3Aregular%2C700|font_style:700%20bold%20regular%3A700%3Anormal”][vc_empty_space]
\"\"<\/a><\/div>
Forever with us, Josep Maria<\/a><\/div>
August 20, 2025<\/div>

Yesterday, we bid a final farewell to Josep Maria Canela (l\u2019Agust\u00ed), co-founder of the Noelia…<\/p><\/div>

Leer m\u00e1s<\/a><\/div><\/div><\/div>
\"\"<\/a><\/div>
Fundaci\u00f3n Noelia at the Nano Rare Diseases Day 2025: Advancing Research in Nanomedicine<\/a><\/div>
March 12, 2025<\/div>

On March 7, 2025, the Fundaci\u00f3n Noelia had the honor of participating in the Nano…<\/p><\/div>

Leer m\u00e1s<\/a><\/div><\/div><\/div>
\"\"<\/a><\/div>
New advance in the research of Congenital Muscular Dystrophy due to Collagen Deficiency VI (CMD COL6)<\/a><\/div>
February 13, 2025<\/div>

The Fundaci\u00f3n Noelia has funded an innovative study led by researcher Virginia Arechavala-Gomeza, which takes…<\/p><\/div>

Leer m\u00e1s<\/a><\/div><\/div><\/div>
\"\"<\/a><\/div>
Together we make magic: a challenge made reality.<\/a><\/div>
December 23, 2024<\/div>

Last December, thanks to the incredible solidarity of so many people, the \"Together we make…<\/p><\/div>

Leer m\u00e1s<\/a><\/div><\/div><\/div><\/div>[vc_empty_space height=”15px”]
See All<\/span><\/a><\/div> [\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row][vc_row full_width=”stretch_row” remove_bottom_col_margin=”true” css=”.vc_custom_1645617943705{background-color: #951b81 !important;}”][vc_column]
0<\/span><\/div>
Years<\/div><\/div><\/div><\/div>
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Projects<\/div><\/div><\/div><\/div>
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Invested<\/div><\/div><\/div><\/div>
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Implication<\/div><\/div><\/div><\/div><\/div>[\/vc_column][\/vc_row][vc_row][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_empty_space][vc_custom_heading text=”Research Projects” font_container=”tag:h2|text_align:left|color:%23000000″ google_fonts=”font_family:Montserrat%3Aregular%2C700|font_style:700%20bold%20regular%3A700%3Anormal”][vc_empty_space][vc_row_inner][vc_column_inner width=”1\/3″]
\"BIOMARKER<\/figure>

BIOMARKER RESEARCH FOR COL6-RELATED DYSTROPHIES<\/h2>

Search for reliable biomarkers that allow evaluating the progression of the disease and the response to new treatments.<\/p>\n

View Project<\/a><\/p>\n<\/div><\/div><\/div>[\/vc_column_inner][vc_column_inner width=”1\/3″]

\"PERSONALIZED<\/figure>

PERSONALIZED MEDICINE THERAPIES FOR CONGENITAL MUSCULAR DYSTROPHIES<\/h2>

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.<\/p>\n

View Project<\/a><\/p>\n<\/div><\/div><\/div>[\/vc_column_inner][vc_column_inner width=”1\/3″]

\"DEVELOPING<\/figure>

DEVELOPING TWO RNA DIRECTED APPROACHES TO TREATING THE RECURRENT GLYCINE VARIANTS P.G284R AND P.G293R IN COL6A1<\/h2>

Chemical engineering of therapeutic siRNAs and use of circular RNA guides.<\/p>\n

View Project<\/a><\/p>\n<\/div><\/div><\/div>[\/vc_column_inner][\/vc_row_inner][vc_empty_space]

See all Projects<\/span><\/a><\/div> [\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row][vc_row full_width=”stretch_row” content_placement=”middle” remove_bottom_col_margin=”true” css=”.vc_custom_1645619948611{padding-top: 30px !important;padding-bottom: 30px !important;background-color: #e60081 !important;}” el_class=”wpex-bg-accent”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″]
Every little gesture adds up. Support the research.<\/span><\/a><\/div>Make a donation!<\/span><\/span><\/span><\/a> <\/div>[\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1645620264146{background-color: #ededed !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_empty_space]

Follow Us!<\/span><\/h2>[vc_empty_space height=”30px”][vc_row_inner][vc_column_inner width=”1\/4″]
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Noelia Foundation official song<\/span><\/h3>\n

\u00a1Dale Fuerza,
\nDale Vida!<\/h2>\n

 <\/p>\n

\u201cDedicated to the History of Noelia Foundation and all Collagen VI families\u201d<\/em><\/p>\n

From the singer-songwriter, Jos\u00e9 Luis Caballero. November 2018[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1645620264146{background-color: #ededed !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_empty_space]

Give solidarity. Give research minutes.
\nGive the Noelia Foundation.<\/span><\/h2>[vc_empty_space height=”30px”]\n\t
\n\n\t\t