[et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” background_image=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png” background_position=”bottom_center” background_vertical_offset=”20%” custom_padding=”0px||0px||true|false” background_last_edited=”on|desktop” background_position_tablet=”bottom_right” background_position_phone=”center_right” global_module=”28071″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_dmb_breadcrumbs _builder_version=”4.27.4″ _module_preset=”default” body_text_color=”#FFFFFF” body_font_size=”12px” link_text_color=”#35A4BB” custom_margin=”||5px||false|false” custom_padding=”||0px||false|false” body_font_size_tablet=”12px” body_font_size_phone=”10px” body_font_size_last_edited=”on|desktop” global_colors_info=”{}”][\/et_pb_dmb_breadcrumbs][et_pb_heading title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@” _builder_version=”4.27.4″ _dynamic_attributes=”title” _module_preset=”default” title_font=”–et_global_heading_font|300|||||||” title_text_color=”#FFFFFF” title_font_size=”40px” custom_margin=”||3px|||” title_font_size_tablet=”” title_font_size_phone=”25px” title_font_size_last_edited=”on|phone” global_colors_info=”{}”][\/et_pb_heading][et_pb_button button_url=”\/contact-us\/” button_text=”Contact Us” _builder_version=”4.27.4″ _module_preset=”default” custom_button=”on” button_text_size=”15px” button_text_color=”#C02E43″ button_bg_color=”rgba(10,22,64,0.53)” button_border_width=”0px” button_icon=”||divi||400″ button_icon_color=”#C02E43″ button_icon_placement=”left” button_on_hover=”off” global_colors_info=”{}” filter_opacity__hover_enabled=”on|hover” filter_opacity__hover=”70%”][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”section” _builder_version=”4.16″ global_colors_info=”{}”][et_pb_row admin_label=”row” _builder_version=”4.16″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Caregivers in the rare disease community face some exceptional hurdles.\u00a0You may even have faced the special challenge of having to be the one to educate your medical providers and others about Erdheim-Chester disease.\u00a0So you need information, education, and tools that can help you manage the many daunting tasks you face as you care for your loved one.\u00a0 The sources below will direct you to organizations that offer assistance and\/or information that may help.<\/p>\n
To connect with others caring for loved ones with ECD, join our virtual chats for caregivers.\u00a0 Register for the next meeting here<\/a>.<\/p>\n [\/et_pb_text][et_pb_toggle title=”Caregiver Respite Programs” open_toggle_text_color=”#FFFFFF” open_toggle_background_color=”#f2f2f2″ closed_toggle_background_color=”#35A4BB” icon_color=”#FFFFFF” toggle_icon=”"||divi||400″ open_icon_color=”#C02E43″ open_toggle_icon=”!||divi||400″ module_class=”custom-toggle” _builder_version=”4.27.4″ _module_preset=”default” title_text_color=”#FFFFFF” title_font=”|600|||||||” border_radii=”on|4px|4px|4px|4px” border_width_all=”0px” global_colors_info=”{}”]<\/p>\n NORD<\/strong><\/a> provides financial assistance to enable caregivers a break to attend a conference, event, or simply have an afternoon or evening away from caregiving. Awards are granted on a first-come, first-served basis to eligible individuals.<\/p>\n Learn More<\/a><\/p>\n [\/et_pb_toggle][et_pb_toggle title=”Advocacy and Support” open_toggle_text_color=”#FFFFFF” open_toggle_background_color=”#f2f2f2″ closed_toggle_background_color=”#35A4BB” icon_color=”#FFFFFF” toggle_icon=”"||divi||400″ open_icon_color=”#C02E43″ open_toggle_icon=”!||divi||400″ module_class=”custom-toggle” _builder_version=”4.27.4″ _module_preset=”default” title_text_color=”#FFFFFF” title_font=”|600|||||||” hover_enabled=”0″ border_radii=”on|4px|4px|4px|4px” border_width_all=”0px” global_colors_info=”{}” sticky_enabled=”0″]The Caregiver Action \u00a0Network (CAN)<\/a><\/strong>\u00a0is a family caregiver organization working to improve the quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN is a nonprofit organization providing education, peer support, and resources to family caregivers and serves a broad spectrum of family caregivers and care situations.<\/p>\n Family Caregiver Alliance<\/a><\/strong>\u00a0This organization provides a public voice for caregivers, offering assistance through education, services, research, and advocacy.<\/p>\n Empowering Caregivers<\/a><\/strong>\u00a0This site provides a safe, nurturing site for all caregivers with emotional and spiritual support and a vast amount of both online and offline resources for caregivers.<\/p>\n The Invisible Disabilities Association (IDA)<\/a><\/strong>\u00a0encourages, educates, and connects people and organizations touched by illness, pain, and disability around the globe. IDA also offers resources for information about various illnesses, help with costs of medications, disability benefits, and more.<\/p>\n HealingWell.com<\/a><\/strong>\u00a0features a thriving support community, blog, videos, a newsletter, articles, and resources to help patients actively manage the challenges of living with chronic illness.<\/p>\n The\u00a0Academy of Nutrition and Dietetics<\/a><\/strong>\u00a0\u00a0(formerly the American Dietetic Association) provides accurate information and various resources about nutrition, wellness, and related areas.<\/p>\n American \u00a0Nutrition Association<\/a><\/strong>\u00a0The American Nutrition Association promotes optimal health through nutrition and wellness education. Educating both laypeople and professionals about the health benefits of nutrition and wellness, it focuses on science-based nutrition.<\/p>\n LLS One-On-One Nutrition Consultations <\/a>Patients and their care partners may receive a free one-on-one phone consultation with one of LLS\u2019s registered dietitians who have expertise in oncology nutrition. Eating well helps people with cancer feel better, stay stronger, and better tolerate the side effects of treatment. Good nutrition also helps the body replace blood cells and healthy tissues that are damaged as a result of cancer treatment. You can schedule online or call LLS\u2019 Nutrition Education Services Center at 877-467-1936<\/a>. Schedule an appointment and learn more here: www.LLSnutrition.org\/schedule<\/a>.<\/p>\n The US National Institutes of Health (NIH)<\/a> has a Caregiving Toolkit to provide informatoin and resources to support caregivers.<\/p>\n