{"id":58934,"date":"2018-05-31T15:19:25","date_gmt":"2018-05-31T19:19:25","guid":{"rendered":"https:\/\/rarediseases.org\/a-celebration-of-nords-35th-anniversary\/"},"modified":"2018-05-31T15:19:25","modified_gmt":"2018-05-31T19:19:25","slug":"a-celebration-of-nords-35th-anniversary","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/a-celebration-of-nords-35th-anniversary\/","title":{"rendered":"A Celebration of NORD’s 35th Anniversary"},"content":{"rendered":"

On Thursday, May 17 at the Andrew W. Mellon Auditorium in Washington, D.C. the rare disease community came together to celebrate NORD\u2019s 35<\/span>th<\/span> Anniversary and to recognize the amazing accomplishments of the 2018 honorees during NORD\u2019s 35<\/span>th<\/span> Anniversary Celebration presenting the Rare Impact Awards.\u00a0<\/span><\/p>\n

\"NORD
NORD Rare Impact Awards at Mellon Auditorium in Washington, D.C., on Thursday, May 17, 2018. John Boal Photography<\/figcaption><\/figure>\n

Hundreds were in attendance at the stately Mellon that evening and for the first time, NORD broadcasted the event via Facebook Live, welcoming over 3,500 individuals to the event from their homes. <\/span><\/p>\n

\u201cIt was incredible to have so many people join us in D.C. and online to focus on rare diseases and to note NORD\u2019s 35th anniversary,\u201d said NORD President and CEO Peter L. Saltonstall. \u201cThe evening showcased the remarkable stories of those creating a brighter future for every person affected by a rare disease. Their stories and achievements are truly inspirational.\u201d <\/span><\/p>\n

Highlights included award presentations to Lifetime Achievement Award Honoree, <\/span>Robert M. Campbell, Jr., M.D.<\/b>; Public Health Leadership Honoree, <\/span>Richard Pazdur, M.D.<\/b>; Abbey S. Meyers Leadership Award Honoree <\/span>Founder of GBS|CIDP Foundation International, Estelle Benson;<\/b> Rare Impact Award Honorees <\/span>Patrick Dunegan, Elisabeth Dykens, Ph.D., Maria Kefalas, Ph.D., The Honorable Frank Pallone, Jr. (R-NJ), Ellen V. Sigal, Ph.D. and The Honorable Marcy Toepel (R-PA)<\/b>;. In addition, Industry Innovation Awards were given to six companies for their work bringing important new treatments to patients. Those companies included <\/span>BioMarin Pharmaceutical, Inc., Cook Medical LLC, Foundation Medicine, Inc., Novartis, Spark Therapeutics and Ultragenyx Pharmaceutical, Inc.<\/b><\/p>\n

To help commemorate the 35<\/span>th<\/span> Anniversary that evening, NORD welcomed long-time friend and Emmy Award-nominated actress Patricia Richardson as the evening\u2019s emcee. Michael Smedley, patient advocate and son of Kristen Smedley, founder of Curing Retinal Blindness (a NORD Member Organization) performed on the piano for attendees. His original song, \u201cChanging What It Means to be Blind,\u201d was performed for everyone in the rare disease community and inspired the audience to continue blazing the path forward for the community, \u201cstep by step one day at a time\u201d as his soulful lyrics mention. The David Bach Consort provided a musical accompaniment to the evening, which included a lovely seated dinner.<\/span><\/p>\n

Looking back on a beautiful evening, the team at NORD is thankful to all those who attended, to our sponsors for their generous support, to our media partners for helping to spread the word, and to the viewers online. Together, we will continue to make progress for the rare disease community. Photos from the event can be found here<\/a> and an archived copy of the Facebook Live video recording can be found here<\/a>. <\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

On Thursday, May 17 at the Andrew W. Mellon Auditorium in Washington, D.C. the rare disease community came together to celebrate NORD\u2019s 35th Anniversary and to recognize the amazing accomplishments … <\/p>\n

Continue reading \u00abA Celebration of NORD’s 35th Anniversary\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"featured_media":12538,"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":[503,662],"tags":[1574,1631,1628,1630,225,1626,262,1629,243,1568,209,1627,1302,1089,930,1632],"class_list":["post-58934","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-get-involved","tag-abbey-s-meyers-leadership-award","tag-curing-retinal-blindness-foundation","tag-lifetime-achievement-award","tag-michael-smedley","tag-nord","tag-nords-35th-anniversary-celebration","tag-orphan-drug-act","tag-patricia-richardson","tag-peter-l-saltonstall","tag-public-health-leadership-award","tag-rare-disease-community","tag-rare-impact-award","tag-rare-impact-award-honoree","tag-rare-impact-award-honorees","tag-rare-impact-awards","tag-the-david-bach-consort"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58934","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58934"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58934\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12538"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58934"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58934"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58934"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}