{"id":2792,"date":"2023-02-27T16:48:25","date_gmt":"2023-02-27T16:48:25","guid":{"rendered":"https:\/\/touchime.org\/?p=2792"},"modified":"2023-03-13T15:50:06","modified_gmt":"2023-03-13T15:50:06","slug":"rare-disease-day-2023-raising-awareness","status":"publish","type":"post","link":"https:\/\/touchime.org\/news\/rare-disease-day-2023-raising-awareness\/","title":{"rendered":"Rare Disease Day 2023: Raising Awareness"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-large wp-image-2797\" src=\"https:\/\/touchime.org\/wp-content\/uploads\/sites\/21\/2023\/02\/LinkedIn_Facebook_1080x1920-17-1024x576.png\" alt=\"\" width=\"1024\" height=\"576\" srcset=\"https:\/\/touchime.org\/wp-content\/uploads\/sites\/21\/2023\/02\/LinkedIn_Facebook_1080x1920-17-1024x576.png 1024w, https:\/\/touchime.org\/wp-content\/uploads\/sites\/21\/2023\/02\/LinkedIn_Facebook_1080x1920-17-300x169.png 300w, https:\/\/touchime.org\/wp-content\/uploads\/sites\/21\/2023\/02\/LinkedIn_Facebook_1080x1920-17-768x432.png 768w, https:\/\/touchime.org\/wp-content\/uploads\/sites\/21\/2023\/02\/LinkedIn_Facebook_1080x1920-17-1536x864.png 1536w, https:\/\/touchime.org\/wp-content\/uploads\/sites\/21\/2023\/02\/LinkedIn_Facebook_1080x1920-17-800x450.png 800w, https:\/\/touchime.org\/wp-content\/uploads\/sites\/21\/2023\/02\/LinkedIn_Facebook_1080x1920-17.png 1920w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/p>\n<p>This 28 February, we are proud to support our society partner, <strong><a href=\"https:\/\/rarediseases.org\" target=\"_blank\" rel=\"noopener nofollow\"><span style=\"color: #0000ff\">The National Organization for Rare Disorders (NORD)<\/span> <\/a><\/strong>and #RareDiseaseDay by shining a spotlight on some of the challenges faced by those living with and managing rare diseases.<\/p>\n<p>To start, we recommend watching our recent video interview with Lisa Sarfaty (NORD\u2019s Vice President of Community Engagement), which explores how to address inequities for those living with a rare condition.<\/p>\n<p><iframe loading=\"lazy\" class=\"wistia_embed\" title=\"TMM ONC Lisa Sarfaty VID 1 TAKE 3 Video\" src=\"https:\/\/fast.wistia.net\/embed\/iframe\/6i1j4ibvul?seo=false\" width=\"750\" height=\"422\" frameborder=\"0\" scrolling=\"no\"><\/iframe><\/p>\n<p><span style=\"color: #0000ff\"><a style=\"color: #0000ff\" title=\"Lisa Sarfaty: Exploring and addressing inequities in rare diseases\" href=\"https:\/\/touchneurology.com\/rare-diseases\/conference-hub\/lisa-sarfaty-exploring-and-addressing-inequities-in-rare-diseases\/\" target=\"_blank\" rel=\"noopener nofollow\"><strong>Lisa Sarfaty: Exploring and addressing inequities in rare diseases<\/strong><\/a><\/span><\/p>\n<p>We then recommend delving into some of the realities of a rare diagnosis with our interviews documenting personal experiences of living with a rare condition.<\/p>\n<p><strong>Ethan Crough <span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/touchendocrinology.com\/osteoporosis\/conference-hub\/ethan-crough-rare-disease-day-2022-living-with-achondroplasia-celebrating-diversity-and-increasing-awareness\/\" target=\"_blank\" rel=\"noopener nofollow\">Living with achondroplasia \u2013 Celebrating diversity and increasing awareness<\/a><\/span><\/strong><\/p>\n<p><strong>Megan Hunter\u00a0 <span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/touchneurology.com\/neuromuscular-diseases\/conference-hub\/megan-hunter-rare-disease-day-2022-living-with-myasthenia-gravis-a-journey-to-diagnosis\/\" target=\"_blank\" rel=\"noopener nofollow\">Living with myasthenia gravis \u2013 A journey to diagnosis<\/a><\/span><\/strong><\/p>\n<p><strong>Shekita Green <span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/touchneurology.com\/neuroimmunology\/conference-hub\/shekita-green-rare-disease-day-2022-living-with-neuromyelitis-optica-spectrum-disorder-nmosd-a-patient-perspective\/\" target=\"_blank\" rel=\"noopener nofollow\">Living with neuromyelitis optica spectrum disorder \u2013 A patient\u2019s perspective<\/a><\/span><\/strong><\/p>\n<p>It\u2019s also vital to address the challenges rare diseases pose to healthcare professionals, particularly in diagnosis and management. Learn more from these leading experts as they explore various rare diseases.<\/p>\n<p><span style=\"color: #808080\"><strong>Dr Spero R Cataland<\/strong><\/span> <strong><a href=\"https:\/\/touchoncology.com\/haematology\/conference-hub\/spero-r-cataland-rare-disease-day-acquired-thrombotic-thrombocytopenic-purpura-risks-complications-and-the-impact-on-daily-life\/\" target=\"_blank\" rel=\"noopener nofollow\"><span style=\"color: #0000ff\">Acquired\/immune TTP \u2013 Risks, complications and the impact on daily life<\/span><\/a><\/strong><\/p>\n<p><span style=\"color: #808080\"><strong>Prof. Jackie Palace<\/strong><\/span> <strong><span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/touchneurology.com\/neuroimmunology\/conference-hub\/jackie-palace-rare-disease-day-2022-improving-diagnosis-and-treatment-of-neuromyelitis-optica-spectrum-disorder\/\" target=\"_blank\" rel=\"noopener nofollow\">Improving diagnosis and treatment of neuromyelitis optica spectrum disorder<\/a><\/span><\/strong><\/p>\n<p><span style=\"color: #808080\"><strong>Dr Richard Keen<\/strong><\/span> <strong><span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/touchendocrinology.com\/osteoporosis\/conference-hub\/richard-keen-rare-disease-day-2022-rare-bone-diseases-diagnosis-management-and-patient-quality-of-life\/\" target=\"_blank\" rel=\"noopener nofollow\">Rare bone diseases \u2013 Diagnosis, management and patient quality of life<\/a><\/span><\/strong><\/p>\n<p><span style=\"color: #808080\"><strong>Prof. Said Beydoun<\/strong><\/span> <strong><span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/touchneurology.com\/rare-diseases\/conference-hub\/rare-disease-mg\/\" target=\"_blank\" rel=\"noopener nofollow\">Understanding myasthenia gravis and the impact on patients\u2019 quality of life<\/a><\/span><\/strong><\/p>\n<p><span style=\"color: #808080\"><strong>Prof. Damara Ortiz<\/strong><\/span> <strong><span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/touchcardio.com\/congenital-conditions\/conference-hub\/damara-ortiz-rare-disease-day-2022-the-impact-of-pompe-disease-and-the-importance-of-newborn-screening\/\" target=\"_blank\" rel=\"noopener nofollow\">The impact of Pompe disease and the importance of newborn screening<\/a><\/span><\/strong><\/p>\n<p>Finally, we would like to say a huge thank you to everyone who took the time to speak with us.\u00a0 We hope that by sharing our conversations, we can continue our work to support the rare disease community by increasing awareness and improving understanding.<\/p>\n<p>To learn more about how you can support Rare Disease Day, watch:<\/p>\n<p><span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/touchneurology.com\/rare-diseases\/conference-hub\/lisa-sarfaty-help-support-rare-disease-day\/\" target=\"_blank\" rel=\"noopener nofollow\"><strong>Lisa Sarfaty: Help support Rare Disease Day<\/strong><\/a><\/span><\/p>\n<p>You\u2019ll find further information here: <strong><span style=\"color: #0000ff\"><a style=\"color: #0000ff\" href=\"https:\/\/www.rarediseaseday.org\/\" target=\"_blank\" rel=\"noopener nofollow\">rarediseaseday.org<\/a><\/span><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>This 28 February, we are proud to support our society partner, The National Organization for Rare Disorders (NORD) and #RareDiseaseDay by shining a spotlight on some of the challenges faced by those living with and managing rare diseases.\u00a0<\/p>\n","protected":false},"author":77781,"featured_media":2797,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_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":"Rank Math Relevanssi index 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