{"id":19453,"date":"2022-04-05T08:25:50","date_gmt":"2022-04-05T08:25:50","guid":{"rendered":"https:\/\/fundacionnoelia.org\/?page_id=19453"},"modified":"2025-02-26T11:24:16","modified_gmt":"2025-02-26T11:24:16","slug":"the-foundation","status":"publish","type":"page","link":"https:\/\/fundacionnoelia.org\/en\/the-foundation\/","title":{"rendered":"The Foundation"},"content":{"rendered":"[vc_row][vc_column][vc_column_text]\n

Fundaci\u00f3n Noelia<\/strong><\/span><\/h1>\n

Children against Collagen VI Congenital Muscular Dystrophy<\/strong><\/h3>\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_row_inner][vc_column_inner width=”2\/5″][vc_column_text]Is a Spanish non-profit organization, with an international scope, which gathers and represents\u00a0patients and their families<\/strong>.<\/p>\n

A\u00a0non-profit organization<\/strong>, established in November 2015, based in Catalonia, which was founded by the parents of Adri\u00e0, a child diagnosed at 3 years of age, of this minority disease, degenerative at the muscular level and without cure to today.[\/vc_column_text][\/vc_column_inner][vc_column_inner width=”1\/5″]

\"\"<\/div><\/figure>[\/vc_column_inner][vc_column_inner width=”2\/5″][vc_column_text]An entity that\u00a0works directly with the scientific community both nationally and internationally<\/strong>, with the\u00a0objective<\/strong>of promoting and financing lines of research that can contribute to the development of treatments for the care of this disease, as well as, in the knowledge Of the same.<\/p>\n

We accompany families and those affected<\/strong>\u00a0throughout all stages of the disease and create a structure of mutual support between them,\u00a0encouraging their participation in the entity itself,<\/strong>\u00a0in order to improve their quality of life.[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1645705434340{background-color: #e60081 !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text text_align=”center” color=”#ffffff”]\n

Currently Fundaci\u00f3n Noelia, supports different research projects both in Spain and in the US, has managed to start the creation of a National Registry of affected persons in the CIBERER database and accompanies families and affected persons from different parts of the world.<\/h4>\n[\/vc_column_text][vc_empty_space height=”20px”]
Research Projects<\/span><\/a><\/div> [\/vc_column][vc_column width=”1\/6″][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1645705947190{background-color: #ededed !important;}”][vc_column][vc_empty_space height=”30px”][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1645705998502{background-color: #ededed !important;}”][vc_column width=”1\/2″ css=”.vc_custom_1645705770674{background-image: url(https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2022\/02\/nuestra_historia.png?id=198) !important;}”][vc_empty_space height=”550px”][\/vc_column][vc_column width=”1\/2″][vc_empty_space height=”50px”][vc_row_inner][vc_column_inner width=”1\/6″][\/vc_column_inner][vc_column_inner width=”4\/6″][vc_column_text]\n

GIVE HIM STRENGTH, GIVE HIM LIFE!<\/span><\/h3>\n

Our Story<\/h2>\n

Saying out loud that our son is sick and that there is no cure for his illness is the hardest thing I have ever done. Everyone knows that\u00a0rare diseases exist<\/strong>\u00a0\u00a0but never expect to see that happening to a family member.[\/vc_column_text][vc_empty_space]Know our story<\/span><\/a> [\/vc_column_inner][vc_column_inner width=”1\/6″][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row][vc_row css=”.vc_custom_1646128144171{background-image: url(https:\/\/fundacionnoelia.org\/wp-content\/uploads\/2022\/03\/objetivos_2.png?id=227) !important;background-position: center !important;background-repeat: no-repeat !important;background-size: cover !important;}”][vc_column width=”1\/6″][\/vc_column][vc_column width=”4\/6″][vc_column_text]\n

STEP BY STEP<\/h4>\n

Goals<\/h2>\n