{"id":1128,"date":"2015-10-03T12:47:16","date_gmt":"2015-10-03T12:47:16","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?page_id=1128"},"modified":"2026-06-30T10:13:15","modified_gmt":"2026-06-30T15:13:15","slug":"care-centers","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/fr\/care-centers\/","title":{"rendered":"Centres de soins"},"content":{"rendered":"

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ECD Care Centers<\/h2>\n

A network of ECD Care Centers is available to help patients find knowledgeable doctors to confirm a\u00a0diagnosis\u00a0and to provide\u00a0treatments\u00a0and ongoing care.\u00a0 Many patients often experience a long delay from symptom onset to\u00a0diagnosis.\u00a0 We understand the wait is extremely difficult for patients and their families.\u00a0 The difficulties, many times, can continue after\u00a0diagnosis\u00a0if the patient is told by their medical team that they have no experience in treating ECD.\u00a0 We at the ECDGA believe that the identification of Care Centers will help patients as they search to find a medical team in their region with interest and knowledge in treating ECD patients.[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_video_slider show_thumbnails=”off” _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_video_slider_item src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/Care-Centers.mp4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}” show_image_overlay=”off”][\/et_pb_video_slider_item][et_pb_video_slider_item src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/Care-Centers-Available.mp4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}” show_image_overlay=”off”][\/et_pb_video_slider_item][\/et_pb_video_slider][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.6″ _module_preset=”default” custom_padding=”||0px||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Text” _builder_version=”4.27.6″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” global_colors_info=”{}”]Caring for an ECD patient is complicated and takes a team of\u00a0specialists\u00a0working together. There are a number of institutions committed to having a team of\u00a0specialists\u00a0available to provide the best care to ECD patients. This network of ECD Care Referral Centers is available to help ECD patients and will work with a patient\u2019s local medical team.\u00a0 Patients and local doctors are urged to reach out to the contacts at these centers for help in diagnosing, treating, and monitoring ECD patients.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”2_3,1_3″ _builder_version=”4.27.6″ _module_preset=”default” custom_padding=”14px||||false|false” global_colors_info=”{}”][et_pb_column type=”2_3″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Text” _builder_version=”4.27.6″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” global_colors_info=”{}”]<\/p>\n

Often times a patient cannot travel to an ECD Care Center. In this case a patient may need physician close to home who is knowledgeable\u00a0about ECD\u00a0and the care of someone living with ECD.<\/p>\n

The ECDGA Patient Navigator has access to information about physicians outside of Care Centers who are familiar with ECD. If you are a patient or family member, and need information about physicians outside of Care Centers, please\u00a0contact us.<\/p>\n

There are two types of ECD Care Centers: Referral Center and an Emerging Center.<\/p>\n

An ECD\u00a0Referral Care Center<\/strong>\u00a0is one where the institution or a physician at the institution has treated five or more ECD patients. These centers are willing and able to prescribe ECD\u00a0treatments. The lead physician at each center is willing to provide formal or informal consultation on ECD cases at other centers, subject to local policies and procedures related to performing these consultations. These centers also have a pathologist familiar with the different biopsy appearances of ECD who is willing to collaborate on ECD cases.<\/p>\n

An ECD\u00a0Emerging Care Center<\/strong>\u00a0is an institution that is interested in caring for ECD patients but has not yet treated five or more ECD patients. Any medical professional interested in identifying his\/her institution as a Referral or Emerging Care Center is encouraged to contact the organization.<\/p>\n

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Preparing for Your Appointment<\/h2>\n

The following questions are provided as a guide to help you prepare for conversations with your healthcare team.\u00a0<\/span><\/p>\n

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