{"id":259541,"date":"2024-04-05T12:21:14","date_gmt":"2024-04-05T16:21:14","guid":{"rendered":"https:\/\/rarediseases.org\/?p=259541"},"modified":"2024-04-05T15:10:57","modified_gmt":"2024-04-05T19:10:57","slug":"eric-volunteer","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/eric-volunteer\/","title":{"rendered":"Volunteering as a Medical Student: Eric&#8217;s Story in Honor of National Volunteer Month"},"content":{"rendered":"<p>By Eric W.<\/p>\n<figure id=\"attachment_259542\" aria-describedby=\"caption-attachment-259542\" style=\"width: 300px\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-259542 size-medium\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/04\/Photo-1-300x225.jpg\" alt=\"Students for Rare leaders at a NORD event\" width=\"300\" height=\"225\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/04\/Photo-1-300x225.jpg 300w, https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/04\/Photo-1-1024x768.jpg 1024w, https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/04\/Photo-1-768x576.jpg 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/04\/Photo-1-1536x1152.jpg 1536w, https:\/\/rarediseases.org\/wp-content\/uploads\/2024\/04\/Photo-1-2048x1536.jpg 2048w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><figcaption id=\"caption-attachment-259542\" class=\"wp-caption-text\">Eric, second from right, posing with other Students for Rare leaders<\/figcaption><\/figure>\n<p><span data-contrast=\"auto\">\u201cPlease don\u2019t forget about me\u201d were some of the last words a leprosy patient told me during my most recent trip to Ecuador.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">I was in my early twenties and exploring career interests, which found me working with a nun from Brooklyn who had built a hospital for people affected by <a href=\"https:\/\/rarediseases.org\/rare-diseases\/leprosy\/\">leprosy<\/a>. My experiences with these patients drove me to understand how different players in healthcare can improve access to healthcare innovation for traditionally neglected populations such as people with rare diseases. These patients would launch my career in public health and later in the pharmaceutical and medical device industries. A decade later, I am now a third-year medical student hoping to add patient care to my toolbox.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">During medical school, students are inundated with information and opportunities; it is common to describe this phase as \u201cdrinking from a fire hose\u201d as we are taught about many rare and common diseases and disorders. I was fortunate that a senior classmate invited me to join our university\u2019s <a href=\"https:\/\/rarediseases.org\/get-involved\/students-for-rare\/\">NORD Students for Rare<\/a> chapter. Our student chapter leaned on our skills as students and in two years accomplished the following:<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335551671&quot;:0,&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"0\" data-aria-level=\"1\"><span data-contrast=\"auto\">We published two peer-reviewed articles: <\/span><a href=\"https:\/\/link.springer.com\/article\/10.1007\/s40670-023-01856-2\" rel=\"nofollow noopener\" target=\"_blank\"><span data-contrast=\"none\">one highlighting opportunities for rare disease advocacy in medical education, policy, and innovation<\/span><\/a><span data-contrast=\"auto\"> and <\/span><a href=\"https:\/\/gmr.scholasticahq.com\/article\/83275-incentivizing-drug-development-for-patients-with-rare-diseases\" rel=\"nofollow noopener\" target=\"_blank\"><span data-contrast=\"none\">another discussing incentives for rare disease drug development<\/span><\/a><span data-contrast=\"auto\">.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335551671&quot;:0,&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"0\" data-aria-level=\"1\"><span data-contrast=\"auto\">We implemented medical education reform at our university to include rare disease patient panels so that medical students can learn about the healthcare journey of rare disease patients.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335551671&quot;:0,&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"0\" data-aria-level=\"1\"><span data-contrast=\"auto\">We hosted multi-disciplinary and cross-industry events for our community to learn about rare diseases and the different players that impact patient access to care.\u00a0<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335551671&quot;:0,&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"0\" data-aria-level=\"1\"><span data-contrast=\"auto\">We supported NORD at the annual <a href=\"https:\/\/nordsummit.org\/\" rel=\"nofollow noopener\" target=\"_blank\">Rare Diseases and Orphan Products Breakthrough Summit<\/a> and the <a href=\"https:\/\/livingrare.org\/\" rel=\"nofollow noopener\" target=\"_blank\">Living Rare, Living Stronger Patient and Family Forum<\/a>, including designing and facilitating a breakthrough session on advocacy.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"1\" data-list-defn-props=\"{&quot;335551671&quot;:0,&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" aria-setsize=\"-1\" data-aria-posinset=\"0\" data-aria-level=\"1\"><span data-contrast=\"auto\">We are conducting research studies on medical education reform to improve how medical schools teach about rare diseases.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">We are deeply humbled and grateful to all the patients who have reached out to us and participated in our work.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Finally, I want to talk about the annual <a href=\"https:\/\/nordsummit.org\/\" rel=\"nofollow noopener\" target=\"_blank\">NORD Breakthrough Summit<\/a> in DC; it is one opportunity that makes NORD unique. The NORD Summit brings together all players in healthcare to network, share, and inspire each other. Federal government agencies (FDA and CMS), pharmaceutical and medical device companies, patient advocacy organizations, hospitals, and universities all regularly attend the conference. And everyone understands how tight knit the rare disease community is. It is a meeting unlike any I have attended in the past and is one of the best places to learn about current challenges and the future of rare diseases. <\/span><span data-ccp-props=\"{&quot;134233117&quot;:false,&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559685&quot;:0,&quot;335559737&quot;:0,&quot;335559738&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">I am not a rare disease patient. However, I regularly think about my early rare disease patients and hold their stories close to my heart. What I hope you take away from my story is that anyone can bear witness to the struggle of people affected by rare diseases, and if you are so moved to volunteer, you can use any of your talents to contribute to the rare disease community. Personally, volunteering with NORD enables me to tap into my creativity, stay in touch with patients and families I meet along the way, and develop personally and professionally. It helps me continue my personal mission that every patient deserves not to be forgotten, no matter how challenging or rare their situation.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">It is a joy to work with NORD. NORD has been critical in helping me stay engaged despite a busy medical school schedule. If you want to help improve the lives of people impacted by rare diseases, please consider engaging with NORD\u2019s plentiful resources and opportunities. Your time volunteering can help the community in ways that may surprise you.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><strong>Want to learn how to volunteer with NORD? Attend our upcoming webinar on Thursday, April 25, 2024 at 7:00PM ET! Register at <a href=\"https:\/\/bit.ly\/4aFwQhq\" rel=\"nofollow noopener\" target=\"_blank\">https:\/\/bit.ly\/4aFwQhq<\/a>.<\/strong><\/p>\n<p><strong>You can also sign up to volunteer with NORD today at <a href=\"https:\/\/nam02.safelinks.protection.outlook.com\/?url=https%3A%2F%2Frarediseases.org%2Fvolunteer-application%2F&amp;data=05%7C02%7Cjostroff%40rarediseases.org%7C5dc7512478c046ce6ddc08dc5590aa20%7C035efc06111d43d7946e8319486d4006%7C0%7C0%7C638479327097402645%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&amp;sdata=Oee377XDvoOwZttlWrqobQQ9yZITpM1%2FCL4jOaEfEOs%3D&amp;reserved=0\">https:\/\/rarediseases.org\/volunteer-application\/<\/a>.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>By Eric W. \u201cPlease don\u2019t forget about me\u201d were some of the last words a leprosy patient told me during my most recent trip to Ecuador.\u00a0\u00a0 I was in my &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/eric-volunteer\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Volunteering as a Medical Student: Eric&#8217;s Story in Honor of National Volunteer Month&#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":[662],"tags":[],"class_list":["post-259541","post","type-post","status-publish","format-standard","hentry","category-get-involved"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/259541","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=259541"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/259541\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=259541"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=259541"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=259541"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}