{"id":19457,"date":"2022-04-05T08:29:08","date_gmt":"2022-04-05T08:29:08","guid":{"rendered":"https:\/\/fundacionnoelia.org\/?page_id=19457"},"modified":"2025-02-26T11:24:21","modified_gmt":"2025-02-26T11:24:21","slug":"about-us","status":"publish","type":"page","link":"https:\/\/fundacionnoelia.org\/en\/the-foundation\/about-us\/","title":{"rendered":"About Us"},"content":{"rendered":"[vc_row full_width=”stretch_row” remove_bottom_col_margin=”true” css=”.vc_custom_1627255029534{padding-top: 60px !important;padding-bottom: 70px !important;background-color: #f7f7f7 !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″]
<\/div>

Board Members<\/span><\/h2>[vc_column_text width=”650px” align=”center” text_align=”center”]The Fundaci\u00f3n Noelia is directed by the board of trustees, which is made up of the following people:[\/vc_column_text]
<\/div>
\"\"<\/div>

Noelia Canela<\/h3>

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

\"\"<\/div>

Carlos Ferr\u00e9<\/h3>

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

\"\"<\/div>

Xavi Ferr\u00e9<\/h3>

Secretary and biologist<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Adalbert Beltran<\/h3>

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

<\/div>
\"\"<\/div>

Clara Esmel<\/h3>

Legal Advisor<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Marina Ro\u00e9<\/h3>

Board Member<\/p>\n<\/div><\/div><\/div><\/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_1678274736726{padding-top: 60px !important;padding-bottom: 70px !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″]

Our Team<\/span><\/h2>
<\/div>[vc_column_text width=”650px” align=”center” text_align=”center”]Composed of those affected, relatives and friends, who together with the board of trustees are in charge of the day-to-day tasks of Fundaci\u00f3n Noelia.[\/vc_column_text]
<\/div>
\"\"<\/div>

Dr. Eduard Go\u00f1alons<\/h3>

Scientific Advisor<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Amaia Uribe-etxebarria<\/h3>

Institutional and international relations and delegate in the Basque Country<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Gonzalo Dom\u00ednguez<\/h3>

Marketing manager and delegate in the Basque Country<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Dra. Maria Borrell<\/h3>

Partient Representative<\/p>\n<\/div><\/div><\/div><\/a><\/div>

<\/div>
\"\"<\/div>

Lide Jimenez<\/h3>

Affected Registry Coordinator<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Pedro Moreno<\/h3>

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

\"\"<\/div>

Teresa Marcilla<\/h3>

Editor of the Noelia Foundation blog \u201cLiving with Colagen VI\u201d<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Elena Villaiz\u00e1n<\/h3>

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

<\/div>
\"\"<\/div>

Maria Camacho<\/h3>

Newsletter Publisher<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Rodrigo Mela<\/h3>

Newsletter Publisher<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Alejandra Forcada<\/h3>

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

\"\"<\/div>

Oriol Mas<\/h3>

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

<\/div>
\"\"<\/div>

Lidia Mart\u00ednez<\/h3>

Collaborator<\/p>\n<\/div><\/div><\/div><\/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_1627255029534{padding-top: 60px !important;padding-bottom: 70px !important;background-color: #f7f7f7 !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″]

External Consultans<\/span><\/h2>
<\/div>[vc_column_text width=”650px” align=”center” text_align=”center”]External consultants are members of the Scientific Committee of the\u00a0Foundation Noelia.<\/strong>\u00a0They are directly involved in studying and researching this disease to improve the quality of life of these children and to find a cure. It is urgent to investigate this disease because the muscle involvement is progressive leading to a very important paralysis.[\/vc_column_text]
<\/div>
\"\"<\/div>

Dr. Carsten G. B\u00f6nnemann<\/h3>

Senior Investigator in Neuromuscular and Neurogenetic Disorders at the NINDS National Institute of Neurological Disease and Stroke, Bethesda, MD (USA)<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Dra. Cecilia Jimenez Mallabrera<\/h3>

Laboratory of Applied Research on Children Neuromuscular Diseases.Neuromuscular Pathology Unit. Dept. of Pediatric Neurology…<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Dr. Andr\u00e9s Nascimento Osorio<\/h3>

Neuromuscular Pathology Unit, Department of Neurology, Sant Joan de DeuUniversity Hospital, Barcelona<\/p>\n<\/div><\/div><\/div><\/a>

\"\"<\/div>

Dr. Gustavo Dziewczapolski<\/h3>

He got his Biology degree at the University of Buenos Aires, Argentina in 1991, where…<\/p>\n<\/div><\/div><\/div><\/a><\/div>[\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row]\n","protected":false},"excerpt":{"rendered":"

[vc_row full_width=”stretch_row” remove_bottom_col_margin=”true” css=”.vc_custom_1627255029534{padding-top: 60px !important;padding-bottom: 70px !important;background-color: #f7f7f7 !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text width=”650px” align=”center” text_align=”center”]The Fundaci\u00f3n Noelia is directed by the board of trustees, which is made up of the following people:[\/vc_column_text][\/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_1678274736726{padding-top: 60px !important;padding-bottom: 70px !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text width=”650px” align=”center” text_align=”center”]Composed of those affected, relatives and friends, who together with the…<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":19453,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-19457","page","type-page","status-publish","hentry","entry","no-media"],"yoast_head":"\nAbout Us - 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Fundaci\u00f3n Noelia","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/fundacionnoelia.org\/en\/the-foundation\/about-us\/","og_locale":"en_US","og_type":"article","og_title":"About Us - Fundaci\u00f3n Noelia","og_description":"[vc_row full_width=”stretch_row” remove_bottom_col_margin=”true” css=”.vc_custom_1627255029534{padding-top: 60px !important;padding-bottom: 70px !important;background-color: #f7f7f7 !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text width=”650px” align=”center” text_align=”center”]The Fundaci\u00f3n Noelia is directed by the board of trustees, which is made up of the following people:[\/vc_column_text][\/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_1678274736726{padding-top: 60px !important;padding-bottom: 70px !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text width=”650px” align=”center” text_align=”center”]Composed of those affected, relatives and friends, who together with the…","og_url":"https:\/\/fundacionnoelia.org\/en\/the-foundation\/about-us\/","og_site_name":"Fundaci\u00f3n Noelia","article_modified_time":"2025-02-26T11:24:21+00:00","twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"8 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/fundacionnoelia.org\/en\/the-foundation\/about-us\/","url":"https:\/\/fundacionnoelia.org\/en\/the-foundation\/about-us\/","name":"About Us - 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