{"id":20554,"date":"2023-02-17T09:45:03","date_gmt":"2023-02-17T09:45:03","guid":{"rendered":"https:\/\/news.nnlm.gov\/region_5\/?p=20554"},"modified":"2023-02-17T17:38:08","modified_gmt":"2023-02-17T17:38:08","slug":"care-about-rare-resources-for-rare-disease","status":"publish","type":"post","link":"https:\/\/news.nnlm.gov\/region_5\/care-about-rare-resources-for-rare-disease\/","title":{"rendered":"Care about Rare: Resources for Rare Disease"},"content":{"rendered":"<p data-pm-slice=\"1 1 []\"><a href=\"https:\/\/ncats.nih.gov\/news\/events\/rdd\" target=\"_blank\" rel=\"noopener\">Rare Disease Day<\/a> is coming up on February 28! According to the NIH, Rare Disease Day <em>\u201ctakes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients\u2019 lives.\u201d <\/em>They also note that:<img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-20555 alignright\" src=\"https:\/\/news.nnlm.gov\/region_5\/wp-content\/uploads\/sites\/10\/2023\/02\/fivepercent_rd_sm-300x150.png\" alt=\"Pink stethoscope and blue quote box on a white background with National Institutes of Health branding. Quote box says only 5% of rare diseases have approved treatments.\" width=\"300\" height=\"150\" srcset=\"https:\/\/news.nnlm.gov\/region_5\/wp-content\/uploads\/sites\/10\/2023\/02\/fivepercent_rd_sm-300x150.png 300w, https:\/\/news.nnlm.gov\/region_5\/wp-content\/uploads\/sites\/10\/2023\/02\/fivepercent_rd_sm.png 512w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<ul>\n<li>An estimated <strong>10,000 rare diseases are affecting about 30 million people<\/strong> in the United States. Most of these people are children.<\/li>\n<li>In all, nearly <strong>10% of the U.S. population<\/strong> have a rare disease.<\/li>\n<\/ul>\n<p>Many rare diseases do not have cures, or even consistent treatment protocols. Individuals living with rare disease have information needs that are very difficult to meet. <em>What doctors know how to treat this disease? What research is being done about this disease? Are other members of my family at risk for this disease? <\/em>Here are some resources to help you and your customers learn more about rare diseases, access relevant information, and help spread the word about <a href=\"https:\/\/ncats.nih.gov\/news\/events\/rdd\" target=\"_blank\" rel=\"noopener\">Rare Disease Day at NIH 2023<\/a>!<\/p>\n<ul>\n<li>The <strong>National Center for Advancing Translational Sciences<\/strong> provides a library of <a href=\"https:\/\/ncats.nih.gov\/engagement\/rare-diseases-community-resources\" target=\"_blank\" rel=\"noopener\"><strong>rare disease community resources<\/strong><\/a> for patients, caregivers, patient support organizations, health care providers and scientists to help learn about rare diseases and advance related research. This includes <strong>free infographics <\/strong>and<strong> social media images <\/strong>you can use to raise awareness.<\/li>\n<li>The <a href=\"https:\/\/ncats.nih.gov\/gard\" target=\"_blank\" rel=\"noopener\"><strong>Genetic and Rare Diseases Information Center<\/strong><\/a> is designed specially for people living with a rare disease and their families. Information is available in both English and Spanish.<\/li>\n<li><strong>MedlinePlus<\/strong> has a <a href=\"https:\/\/medlineplus.gov\/rarediseases.html\" target=\"_blank\" rel=\"noopener\"><strong>Rare Diseases health topic page<\/strong><\/a>. This has everything we know and love about a health topic page: <strong>plain language<\/strong>, <strong>links to reliable resources<\/strong>, and <strong>access to journal articles<\/strong>. Of note is a link to the <strong><a href=\"https:\/\/medlineplus.gov\/genetics\/\" target=\"_blank\" rel=\"noopener\">Genetics<\/a><\/strong> section of MedlinePlus, where individuals can learn more about specific genetic diseases, understand genetic testing, and even brush up on the science of DNA.<\/li>\n<\/ul>\n<p>Collectively, rare diseases are not that rare. As rare disease research, information, and patient advocacy accelerates with advances in genomic medicine, your organization is well positioned to be a partner in progress.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Rare Disease Day is coming up on February 28! According to the NIH, Rare Disease Day \u201ctakes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients\u2019 lives.\u201d They also note that: An estimated 10,000 rare&#8230; <a href=\"https:\/\/news.nnlm.gov\/region_5\/care-about-rare-resources-for-rare-disease\/\">Read More &raquo;<\/a><\/p>\n","protected":false},"author":2996,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[52,316,10,7],"tags":[119,254,179,389],"class_list":["post-20554","post","type-post","status-publish","format-standard","hentry","category-blog","category-consumer-health","category-health-observances","category-public-health-2","tag-consumer-health","tag-health-information","tag-national-health-observances","tag-rare-disease"],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/posts\/20554","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/users\/2996"}],"replies":[{"embeddable":true,"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/comments?post=20554"}],"version-history":[{"count":10,"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/posts\/20554\/revisions"}],"predecessor-version":[{"id":20572,"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/posts\/20554\/revisions\/20572"}],"wp:attachment":[{"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/media?parent=20554"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/categories?post=20554"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/news.nnlm.gov\/region_5\/wp-json\/wp\/v2\/tags?post=20554"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}