{"id":59141,"date":"2020-05-05T18:46:29","date_gmt":"2020-05-05T22:46:29","guid":{"rendered":"https:\/\/rarediseases.org\/new-community-survey-findings-from-nord-reveal-significant-impact-of-covid-19-on-americans-living-with-rare-diseases\/"},"modified":"2020-05-05T18:46:29","modified_gmt":"2020-05-05T22:46:29","slug":"new-community-survey-findings-from-nord-reveal-significant-impact-of-covid-19-on-americans-living-with-rare-diseases","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/new-community-survey-findings-from-nord-reveal-significant-impact-of-covid-19-on-americans-living-with-rare-diseases\/","title":{"rendered":"New Community Survey Findings from NORD Reveal Significant Impact of COVID-19 on Americans Living with Rare Diseases"},"content":{"rendered":"<p><b>Washington, DC, May 5, 2020&#8211;<\/b><span style=\"font-weight: 400;\">Today, the National Organization for Rare Disorders\u00a0<\/span>(NORD\u00ae) <span style=\"font-weight: 400;\">released the findings of its recent survey on the <\/span><span style=\"font-weight: 400;\">critical issues and concerns the rare disease community is facing due to the COVID-19 pandemic. <\/span><span style=\"font-weight: 400;\">The <\/span><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2020\/05\/NRD-2061-RareInsights-CV19-Report_v2-2.pdf\"><span style=\"font-weight: 400;\">COVID-19 Community Survey Report<\/span><\/a><span style=\"font-weight: 400;\"> is published through RareInsights<\/span><span style=\"font-weight: 400;\">\u2122,<\/span> <span style=\"font-weight: 400;\">a NORD initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In the United States, over 25 million patients and families who are impacted by rare diseases are now managing consequential challenges brought on by the novel coronavirus. People with underlying health conditions face not only more severe illness, but rare patients, caregivers and family members are experiencing other considerable life disruptions\u2014including financial instability, canceled medical appointments, concerns regarding drug shortages and other important issues. With a goal of shining a light on these issues and in order to best provide supportive resources that address their top concerns, NORD reached out to the rare community directly.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The COVID-19 Community Survey Report reveals the far-reaching impact the pandemic is having on rare patients and families. The findings reflect a community directly affected and overwhelmingly concerned about the COVID-19 crisis.<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">95% of respondents have been impacted at a cost to their immediate and long-term health and well-being<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">98% are worried about COVID-19; of those, 67% are very or extremely worried<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">74% have had a medical appointment canceled; of those, 65% were offered an alternative appointment via telephone or video<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">69% of respondents are concerned about medication and medical supply shortages<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">772 participants responded to the survey conducted by NORD\u2019s research team from April 1 through April 8, 2020. Respondents represent 49 of 50 states and Washington, DC, and multiple disease categories, including genetic conditions, primary immunodeficiencies, neurological, blood, metabolic, movement, eye, skin and other types of rare disorders.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cThrough the information generously shared with us by survey participants, we are able to better understand the specific concerns and impact of COVID-19 on the rare community,\u201d said Vanessa Boulanger, NORD\u2019s Director of Research. \u201cThis knowledge helps us to provide the support and services most needed by our community during this challenging time.\u201d\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">A follow-up survey is being planned to further monitor the experiences of patients and families as the pandemic continues. NORD is listening and will continue to channel the community\u2019s collective voice into action,<\/span> <span style=\"font-weight: 400;\">using information such as this survey data to help apprise policymakers on the challenges members of the rare community are facing and to shape our own programs and services. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">As part of its response to the evolving COVID-19 situation, NORD\u2019s policy team has been working to protect access to necessary medical treatment including telemedicine, home infusions and medication refills. NORD is also continuing to advocate to the Department of Health and Human Services and state health departments to ensure rare disease patients are not discriminated against during COVID-19 triaging.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">NORD has developed the growing <\/span><a href=\"https:\/\/rarediseases.org\/covid-19\/\"><span style=\"font-weight: 400;\">COVID-19 Resource Center<\/span><\/a><span style=\"font-weight: 400;\">, providing materials created by NORD as well as information from vetted sources to help educate and empower people living with rare diseases during this time. Also available is the <\/span><a href=\"https:\/\/rarediseases.org\/nord-launches-financial-assistance-program-for-rare-disease-community-members-impacted-by-covid-19\/\"><span style=\"font-weight: 400;\">NORD COVID-19 Critical Relief Program<\/span><\/a><span style=\"font-weight: 400;\">, which provides assistance with non-medical essential needs to eligible rare disease patients. <\/span><a href=\"https:\/\/rarediseases.org\/covid-19-emergency-programs\/\"><span style=\"font-weight: 400;\">Donations<\/span><\/a><span style=\"font-weight: 400;\"> to the program are currently being accepted.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Be sure to read the <\/span><span style=\"font-weight: 400;\">COVID-19 Community Survey Report, available for download <\/span><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2020\/05\/NRD-2061-RareInsights-CV19-Report_v2-2.pdf\">here<\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<p style=\"text-align: center;\">#\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 #\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 #<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Washington, DC, May 5, 2020&#8211;Today, the National Organization for Rare Disorders\u00a0(NORD\u00ae) released the findings of its recent survey on the critical issues and concerns the rare disease community is facing &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/new-community-survey-findings-from-nord-reveal-significant-impact-of-covid-19-on-americans-living-with-rare-diseases\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;New Community Survey Findings from NORD Reveal Significant Impact of COVID-19 on Americans Living with Rare Diseases&#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":[2227,190,192,504,193],"tags":[2308,2229,760,2311,2312,315,209,2313,2309,1521,2310],"class_list":["post-59141","post","type-post","status-publish","format-standard","hentry","category-covid-19","category-featured-news","category-patients-members","category-press-releases","category-research","tag-community-survey","tag-covid-19","tag-department-of-health-and-human-services","tag-home-infusions","tag-medication-refills","tag-rare-disease","tag-rare-disease-community","tag-state-health-departments","tag-survey-findings","tag-telemedicine","tag-triaging"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59141","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=59141"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59141\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59141"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59141"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59141"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}