{"id":109420,"date":"2023-02-23T12:00:27","date_gmt":"2023-02-23T17:00:27","guid":{"rendered":"https:\/\/rarediseases.org\/?p=109420"},"modified":"2023-02-24T16:23:28","modified_gmt":"2023-02-24T21:23:28","slug":"rare-disease-day-2023-a-day-to-be-heard","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rare-disease-day-2023-a-day-to-be-heard\/","title":{"rendered":"Rare Disease Day 2023: \u2018A Day To Be Heard\u2019"},"content":{"rendered":"<h3><b class=\"ac-designer-copy\"><span class=\"ac-designer-copy\">Advocates Raise Their Voices To Support People Living With Rare Diseases<\/span><\/b><\/h3>\n<p><a class=\"ac-designer-copy\" href=\"https:\/\/rarediseaseday.us\/\" target=\"_blank\" rel=\"noopener nofollow\"><span class=\"ac-designer-copy\">Rare Disease Day<\/span><\/a>\u00a02023\u00a0<span class=\"ac-designer-copy\">is fast approaching, and NORD and its global partners are coming together to spotlight the unique challenges facing the more than 300 million people worldwide who are impacted by rare diseases.<br class=\"ac-designer-copy\" \/><\/span><br class=\"ac-designer-copy\" \/><span class=\"ac-designer-copy\">This year, the\u00a0<\/span><span class=\"ac-designer-copy\">February 28<\/span><span class=\"ac-designer-copy\">\u00a0event falls between two important milestone anniversaries for the U.S. rare disease community:<\/span><\/p>\n<ul class=\"ac-designer-copy\">\n<li class=\"ac-designer-copy\" dir=\"ltr\" aria-level=\"1\"><span class=\"ac-designer-copy\"><span class=\"ac-designer-copy\">The 40th anniversary of Congress\u2019 passage of the Orphan Drug Act on January 4 \u2014 the landmark 1983 legislation to incentivize the development of therapies for rare diseases. The Orphan Drug Act was born out of the advocacy of rare disease champions who raised their collective voice for change.<\/span><\/span><\/li>\n<li class=\"ac-designer-copy\" dir=\"ltr\" aria-level=\"1\"><span class=\"ac-designer-copy\">The 40th anniversary of NORD on May 4, which was born out of the passage of the Orphan Drug Act and has been bringing together advocates during the four decades since to influence change.<\/span><\/li>\n<\/ul>\n<div><span class=\"ac-designer-copy\">\u00a0<\/span><\/div>\n<div class=\"ac-designer-copy\"><span class=\"ac-designer-copy\"><span class=\"ac-designer-marked-selection ac-designer-copy\">As NORD celebrates our 40th anniversary, we are shining a spotlight on the diverse perspectives of rare disease patient groups and partners who will be taking part in Rare Disease Day.<\/span><br class=\"ac-designer-copy\" \/><br class=\"ac-designer-copy\" \/>Below are reflections from NORD patient groups and partners on Rare Disease Day 2023:<\/span><\/div>\n<div><\/div>\n<div><span class=\"ac-designer-copy\">\u00a0<\/span><\/div>\n<div><span class=\"ac-designer-copy\">&#8220;Collaboration with other rare disease organizations helps everyone. Together, no one has a small voice. Together, our voices are heard!&#8221;\u00a0\u00a0<\/span><strong><span class=\"ac-designer-copy\">\u2013 Kirsten Norgaard, President, Adrenal Insufficiency United<\/span><\/strong><br class=\"ac-designer-copy\" \/><br class=\"ac-designer-copy\" \/><span class=\"ac-designer-copy\">&#8220;At the Alagille Syndrome Alliance, we celebrate Rare Disease Day in honor of Alagille Syndrome families \u2013 and all rare disease families around the globe fighting through adversity to be heard, understood, included and represented. We also celebrate this special day in honor of all the rare disease patients who&#8217;ve passed, their friends and family members and to acknowledge their courage and strength trying to live each day to the fullest. We are a rare disease family inside a much bigger global community. Together, we can accomplish so much.&#8221;\u00a0<\/span><strong><span class=\"ac-designer-copy\">\u2013 Roberta Smith, President, Alagille Syndrome Alliance<\/span><\/strong><br class=\"ac-designer-copy\" \/><br class=\"ac-designer-copy\" \/><span class=\"ac-designer-copy\">&#8220;We are participating in Rare Disease Day to help give patients a voice! Rare Disease Day is a day to be heard.&#8221;<\/span><span class=\"ac-designer-copy\">\u00a0<strong>\u2013 Andrea Taylor, Founder, A Twist of Fate-ATS<\/strong><\/span><br class=\"ac-designer-copy\" \/><br class=\"ac-designer-copy\" \/><span class=\"ac-designer-copy\">&#8220;The Histiocytosis Association sees Rare Disease Day as a way for all those impacted by rare diseases to come together and raise our collective voices to spread awareness to the broader public. It&#8217;s a day that inspires people to learn about rare diseases other than their own, share stories of our journeys and advocate for action to develop new treatments and advance research. We participate on behalf of histiocytosis patients and families and for all rare diseases because together, we are a force for change.&#8221;\u00a0<\/span><strong><span class=\"ac-designer-copy\">\u2013 Peter Yanefski,<\/span><span class=\"ac-designer-copy\">\u00a0<\/span><span class=\"ac-designer-copy\">Histiocytosis Association<\/span><\/strong><br class=\"ac-designer-copy\" \/><br class=\"ac-designer-copy\" \/><span class=\"ac-designer-copy\">&#8220;Having a rare disease is not easy. It is so much more than just a diagnosis, and finding support is difficult because not many people share the same diagnosis. The unanswered questions, lack of experts nearby, and psychological and emotional challenges can all be daunting. But sharing our stories can help us know we aren&#8217;t alone.&#8221;\u00a0<\/span><strong><span class=\"ac-designer-copy\">\u2013 Lydia Dubose, Volunteer and Community Coordinator,<\/span><span class=\"ac-designer-copy\">\u00a0<\/span><span class=\"ac-designer-copy\">Siegel Rare Neuroimmune Association<\/span><\/strong><br class=\"ac-designer-copy\" \/><br class=\"ac-designer-copy\" \/><span class=\"ac-designer-copy\">&#8220;The support umbrella organizations such as NORD provide helps ensure an equitable voice for the patient organizations they represent. In turn, having access to training and wider services [allows] patient organizations of all sizes to provide equitable support to their own communities. Supporting one another is key to our communities being heard.&#8221;\u00a0<\/span><strong><span class=\"ac-designer-copy\">\u2013 Rebecca Stewart, CEO, RARE Revolution Magazine<\/span><\/strong><br class=\"ac-designer-copy\" \/><br class=\"ac-designer-copy\" \/><span class=\"ac-designer-copy\">\u201cRare Disease Day is a day we can be both SEEN and heard when we say we have ocular melanoma.\u201d<strong>\u00a0&#8211; Danet Peterson, A Cure in Sight<\/strong><\/span><\/div>\n<div><span class=\"ac-designer-copy\">\u00a0<\/span><\/div>\n<div><span class=\"ac-designer-copy\">February 28 has grown into an essential annual celebration to engage the community, elevate the stories of patients and families, drive donations, and advance critical resources and innovative research for rare diseases. <span style=\"font-weight: 400;\">To learn more and find ways to get involved, visit<\/span><a href=\"https:\/\/rarediseases.lt.acemlna.com\/Prod\/link-tracker?notrack=1&amp;notrack=1&amp;redirectUrl=aHR0cHMlM0ElMkYlMkZyYXJlZGlzZWFzZXMub3JnJTJGcmFyZS1kaXNlYXNlLWRheSUyRg==&amp;sig=CUbmDMnpHNHbCJwpxVrCNgbHSUnUYAqaY3NzNsDfmKnZ&amp;iat=1675894345&amp;a=%7C%7C253547219%7C%7C&amp;account=rarediseases%2Eactivehosted%2Ecom&amp;email=LRRV6glqIfcVPcYsJBrMHi%2FZD%2BmsUFpJrc5fHf6IoVE%3D&amp;s=bad97c655476f96a390a72c05a742011&amp;i=13A39A4A125\" rel=\"nofollow noopener\" target=\"_blank\"> <span style=\"font-weight: 400;\">rarediseaseday.us<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/span><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Advocates Raise Their Voices To Support People Living With Rare Diseases Rare Disease Day\u00a02023\u00a0is fast approaching, and NORD and its global partners are coming together to spotlight the unique challenges &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/rare-disease-day-2023-a-day-to-be-heard\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Rare Disease Day 2023: \u2018A Day To Be Heard\u2019&#8221;<\/span><\/a><\/p>\n","protected":false},"author":8,"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":[1827],"tags":[],"class_list":["post-109420","post","type-post","status-publish","format-standard","hentry","category-rare-disease-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/109420","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\/8"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=109420"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/109420\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=109420"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=109420"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=109420"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}