{"id":59366,"date":"2022-01-18T14:00:38","date_gmt":"2022-01-18T19:00:38","guid":{"rendered":"https:\/\/rarediseases.org\/nord-gives-back-working-aging-or-living-with-a-rare-disease\/"},"modified":"2022-12-02T08:14:36","modified_gmt":"2022-12-02T13:14:36","slug":"nord-gives-back-working-aging-or-living-with-a-rare-disease","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-gives-back-working-aging-or-living-with-a-rare-disease\/","title":{"rendered":"NORD Gives Back: Working, Aging or Living with a Rare Disease"},"content":{"rendered":"<p><span data-contrast=\"none\">After being diagnosed with a rare disease, your life can change drastically. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum to inspire hope for those affected by rare diseases and their families.\u00a0\u00a0\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Let\u2019s continue the important conversations regarding the rare disease community with this #NORDGivesBack content, focused on working and aging with a rare disease, with advice on how to live your best rare life<\/span><span data-contrast=\"none\">.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"none\">Working While Rare<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span> <iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/jqUhwhwLb_A\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><span data-contrast=\"none\">In many cases, a rare diagnosis is the end of diagnostic odyssey but the start of an entirely new journey. Check out \u201cWorking While Rare\u201d to learn more about being in the working world with a rare condition and how to manage your health while getting the job done. This session identifies ways that workers, employers, and colleagues can create a supportive working environment for rare disease patients.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"none\">Aging with a Rare Condition<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span> <iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/I4U52QxrDZc\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p><span data-contrast=\"none\">The rare journey can be a long, arduous road, but so many have gone through it who can offer inspiration and a plan of action for what comes next. \u201cAging with a Rare Condition\u201d features stories of patients living with a rare condition and strategies for getting the most out of life at various stages of illness. Watch now and hear from Kate Lorig, MS, MPH, Dr. PH, Partner Self-Management Resource Center, Nathan Peck, Founder and Chief Executive Officer, Cure VCP Disease Inc., and moderator Patricia Sullivan, North Carolina, Volunteer State Ambassador, NORD Rare Action Network.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"none\">Palliative Care: Debunking the Myths<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span> <iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/6NVwtJmnMf8\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p><span data-contrast=\"none\">The session \u201cPalliative Care: Debunking the Myths\u201d was designed to debunk the myths of palliative care, which is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness. Speakers Blyth Lord, Founder and Executive Director, Courageous Parents Network and Michelle Moon, DO, Hospice Palliative Medicine Fellow, University of Nevada, Reno also highlight the major benefits of palliative care, and provide examples of palliative care from day of diagnosis to end-of-life care.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Connect with others and pass on these resources to allies and advocates you know within the rare disease community. #NORDGivesBack<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Access the <\/span><span data-contrast=\"none\">full playlist<\/span><span data-contrast=\"none\"> on YouTube today. Subscribe to <\/span><span data-contrast=\"none\">NORD\u2019s channel<\/span><span data-contrast=\"none\"> to be alerted to new videos as soon as they are released.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>After being diagnosed with a rare disease, your life can change drastically. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-gives-back-working-aging-or-living-with-a-rare-disease\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD Gives Back: Working, Aging or Living with a Rare Disease&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[192],"tags":[1997,2099,1814,2296,2879,209],"class_list":["post-59366","post","type-post","status-publish","format-standard","hentry","category-patients-members","tag-livingrareforum","tag-diagnostic-odyssey","tag-living-rare","tag-living-rare-living-stronger-patient-and-family-form","tag-nordgivesback","tag-rare-disease-community"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59366","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=59366"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59366\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59366"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59366"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59366"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}