{"id":9180,"date":"2017-07-07T12:59:32","date_gmt":"2017-07-07T10:59:32","guid":{"rendered":"https:\/\/www.humangenetik-umg.de\/genetic-counselling\/seltene-erkrankungen\/"},"modified":"2024-10-30T15:39:07","modified_gmt":"2024-10-30T14:39:07","slug":"rare-diseases","status":"publish","type":"page","link":"https:\/\/www.humangenetik-umg.de\/en\/genetic-counselling\/rare-diseases\/","title":{"rendered":"Rare Diseases"},"content":{"rendered":"
[mk_page_section bg_image=”https:\/\/www.humangenetik-umg.de\/wp-content\/uploads\/2017\/05\/foto_seltene_erkrankungen-e1495199323316.jpg” bg_position=”center center” bg_repeat=”no-repeat” bg_stretch=”true” min_height=”500″ full_width=”true” section_id=”header-bild” sidebar=”sidebar-1″][vc_column][\/vc_column][\/mk_page_section][mk_page_section sidebar=”sidebar-1″][vc_column][vc_empty_space height=”50px”][vc_column_text]\n

Rare Diseases<\/span><\/h1>\n[\/vc_column_text][vc_empty_space height=”15px”][vc_row_inner is_fullwidth_content=”false”][vc_column_inner][vc_column_text css=”.vc_custom_1678443594114{margin-bottom: 0px !important;}”]A disease is considered to be \u201crare\u201c when it affects no more than one in 2,000 people. This means that about 8,000 diseases are rare. Although a specific rare disease may only affect a handful of people worldwide, the picture changes if one looks at all rare diseases as a whole: An estimated four million people live with a rare disease in Germany alone.<\/p>\n

Rare diseases are not always, but very often inherited or congenital conditions. Nevertheless, it often takes many years until a child with a rare disease receives a diagnosis. But a correct diagnosis is essential for deciding on potential therapeutic options and appropriate management strategies.
\n[\/vc_column_text][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/mk_page_section][mk_page_section sidebar=”sidebar-1″][vc_column][vc_empty_space height=”15px”][vc_row_inner is_fullwidth_content=”false”][vc_column_inner width=”2\/3″][vc_column_text css=”.vc_custom_1678443969969{margin-bottom: 0px !important;}”]\n

European Reference Network ERN ITHACA<\/span><\/h3>\n

We have been member in the European Reference Network ERN ITHACA since 2022. This ERN provides an infrastructure for highly specialized, multidisciplinary healthcare for patients with rare malformation syndromes and rare intellectual disability and other neurodevelopmental disorders across Europe. ERN ITHACA builds on dedicated communication pathways, regular exchange between its experts coming from many different countries and centers, joint development of management guidelines for specific disorders and support of research to increase our understanding of the natural history and molecular causes of specific diseases.[\/vc_column_text][vc_column_text css=”.vc_custom_1678443933244{margin-bottom: 0px !important;}”][mk_button dimension=”flat” size=”medium” icon=”mk-icon-long-arrow-right” icon_anim=”side” url=”https:\/\/ern-ithaca.eu\/” target=”_blank” bg_color=”#66cc99″ btn_hover_bg=”#000000″ btn_hover_txt_color=”#ffffff”]To ERN ITHACA[\/mk_button][\/vc_column_text][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_empty_space height=”50px”][mk_image src=”https:\/\/www.humangenetik-umg.de\/wp-content\/uploads\/2023\/03\/ithaca-new-combined-logo-200.jpg” image_size=”full” link=”http:\/\/zseg.uni-goettingen.de” target=”_blank” align=”center”][\/vc_column_inner][\/vc_row_inner][mk_padding_divider][\/vc_column][\/mk_page_section][mk_page_section sidebar=”sidebar-1″][vc_column][vc_empty_space height=”15px”][vc_row_inner is_fullwidth_content=”false”][vc_column_inner width=”2\/3″][vc_column_text css=”.vc_custom_1678443715851{margin-bottom: 0px !important;}”]\n

Center for Rare Diseases G\u00f6ttingen (ZSEG)<\/span><\/h3>\n

The Center for Rare Diseases G\u00f6ttingen (ZSEG) follows an integrated approach that unites research, diagnostics and treatment relating to specific disorders or groups of disorders from various disciplines across the UMG. Bernd Wollnik is a member of the ZSEG Management Board.[\/vc_column_text][\/vc_column_inner][vc_column_inner width=”1\/3″][vc_empty_space height=”50px”][mk_image src=”https:\/\/www.humangenetik-umg.de\/wp-content\/uploads\/2017\/05\/zseg_logo_200.png” link=”http:\/\/zseg.uni-goettingen.de” target=”_blank” align=”center”][\/vc_column_inner][\/vc_row_inner][vc_row_inner is_fullwidth_content=”false”][vc_column_inner][vc_column_text css=”.vc_custom_1678443826762{margin-bottom: 0px !important;}”]Our Institute is an active partner in a number of specific centers within ZSEG. In the following centers, we are taking a leading part in the organization and act as speakers:<\/p>\n