{"id":59337,"date":"2021-10-21T12:15:24","date_gmt":"2021-10-21T16:15:24","guid":{"rendered":"https:\/\/rarediseases.org\/record-setting-nord-breakthrough-summit-welcomes-nearly-1000-members-of-the-rare-disease-community\/"},"modified":"2021-10-21T12:15:24","modified_gmt":"2021-10-21T16:15:24","slug":"record-setting-nord-breakthrough-summit-welcomes-nearly-1000-members-of-the-rare-disease-community","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/record-setting-nord-breakthrough-summit-welcomes-nearly-1000-members-of-the-rare-disease-community\/","title":{"rendered":"Record-Setting NORD Breakthrough Summit Welcomes Nearly 1,000 Members of the Rare Disease Community"},"content":{"rendered":"

Two days<\/span>\u00a0of insightful and engaging<\/span>\u00a0speakers<\/span>, sessions<\/span>,<\/span>\u00a0and networking\u00a0<\/span>at the most important event in rare disease<\/span>\u00a0<\/span>saw<\/span>\u00a0<\/span>record-breaking\u00a0<\/span>attendance<\/span><\/span><\/em><\/h4>\n

October\u00a0<\/span><\/b>21<\/span><\/b>, 2021<\/span><\/b> \u2013 <\/span>This week,\u00a0the National Organization for Rare Disorders (NORD\u00ae) hosted\u00a0the\u00a0virtual\u00a0<\/span>Rare Diseases and Orphan Products Breakthrough Summit<\/span><\/b>, welcoming nearly\u00a01,000\u00a0registrants\u00a0from 33 countries\u00a0for one of the largest and most important global events in rare disease.<\/span>\u00a0<\/span><\/p>\n

The\u00a0Breakthrough Summit was launched as an annual event 12 years ago,\u00a0offering\u00a0an unparalleled opportunity to learn from\u00a0all rare disease stakeholders \u2013\u00a0medical and academic\u00a0experts, regulators and policymakers, innovators, patients,\u00a0caregivers, and industry leaders.\u00a0The 2021\u00a0NORD\u00a0Summit covered\u00a0many\u00a0critical\u00a0and relevant\u00a0topics,\u00a0including drug pricing, health technology and patient-generated data,\u00a0diversity and inclusivity in clinical trials,\u00a0public health and COVID-19,\u00a0international collaboration,\u00a0genetic testing, and more.<\/span>\u00a0<\/span><\/p>\n

On Monday, October 19, the Summit kicked off with\u00a0the plenary, Together We Are Strong, featuring Dr. Titilope\u00a0Fasipe, Co-Director, Sickle Cell and Thalassemia Program, Texas Children\u2019s Cancer and Hematology Centers,\u00a0and Kim McClellan, Arkansas\u00a0NORD\u00a0Rare Action Network\u00ae Volunteer State Ambassador.\u00a0This event set the\u00a0collaborative\u00a0and innovative\u00a0tone\u00a0for the week, as\u00a0all Summit attendees\u00a0and speakers\u00a0work\u00a0together to learn, share,\u00a0and\u00a0usher in the\u00a0new era\u00a0of progress\u00a0for the rare disease world.\u00a0<\/span>\u00a0<\/span><\/p>\n

The keynote\u00a0address\u00a0on Tuesday, October 19\u00a0from\u00a0Janet Woodcock,\u00a0Acting Commissioner, US Food and Drug Administration\u00a0(FDA)\u00a0emphasized the importance of partnership and progress\u00a0on behalf of the over 25 million Americans living with a rare condition.\u00a0\u201cSometimes\u00a0necessity\u00a0forces us to find new approaches\u2026 At the FDA, we created the Office of Orphan Products\u00a0Development to\u00a0focus\u00a0on those [rare] patients and developments of products needed to treat them,\u201d said\u00a0<\/span>Janet Woodcock,\u00a0MD,\u00a0Acting Commissioner, FDA.<\/span><\/b>\u00a0<\/span><\/p>\n

Other highlights from the Summit included\u00a0panels featuring\u00a0leaders from Capitol Hill discussing drug pricing,\u00a0a\u00a0Town\u00a0Hall with experts from the National Institutes of Health (NIH),\u00a0a conversation with\u00a0the three FDA Center Directors,\u00a0and\u00a0breakout sessions\u00a0on\u00a0issues ranging from\u00a0healthcare system savings to\u00a0advancing rare cancer awareness.<\/span>\u00a0<\/span><\/p>\n

Debra Houry, MD, MPH, Acting Principal Deputy Director of\u00a0Centers for Disease Control and\u00a0Prevention (CDC)\u00a0provided a special message to the\u00a0rare disease\u00a0community, as did\u00a0leadership from\u00a0NIH.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201cThe pandemic has emphasized what a problem we have with health disparities and health inequities\u2026 I just want to encourage you,\u00a0despite the challenges we face right now,\u00a0to look at where science is going and feel optimistic that we are on a path toward circumstances where many more of the rare diseases will begin to have therapeutic opportunities come forward.\u00a0The\u00a0future is bright but it\u2019s going to require participation of all of us,\u201d\u00a0said\u00a0<\/span>Francis S. Collins,\u00a0MD, PhD,\u00a0Director, NIH.<\/span><\/b>\u00a0<\/span><\/p>\n

Sponsors for the conference included Sanofi Genzyme, Horizon, Takeda and Travere Therapeutics.\u00a0<\/span>\u00a0<\/span><\/p>\n

All content from the\u00a0NORD\u00a0Breakthrough Summit is available on-demand\u00a0for 30 days after the conclusion of the conference.<\/span><\/b>\u00a0Access is free for members of the media.\u00a0<\/span>Register now<\/span><\/a>\u00a0for full\u00a0access,\u00a0to\u00a0revisit\u00a0lessons learned, and hear from all key experts and speakers.<\/span><\/p>\n

\u00a0<\/span><\/p>\n

About\u00a0the\u00a0National Organization for Rare Disorders (NORD)<\/span><\/i><\/b>
\n<\/span>The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare\u00a0diseases\u202fin\u202fthe\u00a0United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing\u00a0medical\u202fresearch,\u202fand providing patient and family services for those who need them most.\u202fTogether\u00a0with over\u00a0300\u00a0disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases.\u00a0Visit\u202f<\/span><\/i>rarediseases.org<\/span><\/i><\/a>.<\/span><\/i>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Two days\u00a0of insightful and engaging\u00a0speakers, sessions,\u00a0and networking\u00a0at the most important event in rare disease\u00a0saw\u00a0record-breaking\u00a0attendance October\u00a021, 2021 \u2013 This week,\u00a0the National Organization for Rare Disorders (NORD\u00ae) hosted\u00a0the\u00a0virtual\u00a0Rare Diseases and Orphan Products … <\/p>\n

Continue reading “Record-Setting NORD Breakthrough Summit Welcomes Nearly 1,000 Members of the Rare Disease Community”<\/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":[504],"tags":[1172,244,1275,2863,793,498,265,200,928,643],"class_list":["post-59337","post","type-post","status-publish","format-standard","hentry","category-press-releases","tag-breakthrough-summit","tag-fda","tag-food-and-drug-administration","tag-francis-collins","tag-janet-woodcock","tag-national-institutes-of-health","tag-nih","tag-nord-summit","tag-press-release","tag-rare-diseases-and-orphan-products-breakthrough-summit"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59337","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=59337"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59337\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59337"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59337"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59337"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}