{"id":59208,"date":"2020-10-28T13:37:36","date_gmt":"2020-10-28T17:37:36","guid":{"rendered":"https:\/\/rarediseases.org\/nord-announces-rarelaunch-workshops-to-support-those-seeking-to-start-rare-disease-nonprofits-or-research-programs\/"},"modified":"2020-10-28T13:37:36","modified_gmt":"2020-10-28T17:37:36","slug":"nord-announces-rarelaunch-workshops-to-support-those-seeking-to-start-rare-disease-nonprofits-or-research-programs","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-announces-rarelaunch-workshops-to-support-those-seeking-to-start-rare-disease-nonprofits-or-research-programs\/","title":{"rendered":"NORD Announces\u00a0RareLaunch\u00a0Workshops\u00a0to Support Those Seeking to Start Rare Disease Nonprofits or Research Programs\u00a0"},"content":{"rendered":"

Washington, DC, October<\/span><\/b>\u00a028<\/span><\/b>, 2020<\/span><\/b>—<\/span><\/b>As part of\u00a0<\/span>its commitment to\u00a0<\/span>community engagement and organizational capacity building,\u00a0<\/span>t<\/span>he National Organization for Rare Disorders<\/span>\u2019<\/span>\u00a0(NORD\u00ae)<\/span>\u00a0RareLaunch<\/span>\u00ae<\/span>\u00a0training<\/span>\u00a0p<\/span>rogram<\/span>\u00a0<\/span>will host<\/span>\u00a0two days of<\/span>\u00a0<\/span>free\u00a0<\/span>workshops<\/span>\u00a0to take place in December<\/span>,<\/span>\u00a0<\/span>f<\/span>unded in part through a grant from the Chan Zuckerberg Initiative<\/span>\u00a0Donor-Advised Fund, an advised fund of\u00a0<\/span>Silicon<\/span>\u00a0Valley Community Foundation<\/span>.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

More than 50% of<\/span>\u00a0the 7,000 known<\/span>\u00a0rare diseases lack\u00a0<\/span>organized representation or support, leaving patients on their own to search for\u00a0<\/span>trusted\u00a0<\/span>resources and connections.<\/span>\u00a0<\/span>NORD\u2019s RareLaunch\u00a0<\/span>p<\/span>rogram<\/span>\u00a0aims<\/span>\u00a0to empower leaders to start\u00a0<\/span>much-<\/span>needed rare disease nonprofits<\/span>, and support<\/span>s\u00a0<\/span>existing patient advocacy organi<\/span>zations in developing their capacity to engage in research.<\/span>\u00a0<\/span>These two areas of capacity building represent pivotal stages\u00a0<\/span>in a rare disease community\u2019s<\/span> growth and development and therefore are\u00a0<\/span>the focus<\/span>\u00a0of December\u2019s workshops<\/span>.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

Forming a Foundation<\/span><\/i><\/b>\u00a0connect<\/span>s<\/span>\u00a0patient communities<\/span>\u00a0and<\/span>\u00a0<\/span>provides education, training and support for patients<\/span>\u00a0and caregivers<\/span>\u00a0<\/span>looking\u00a0<\/span>to start nonprofits<\/span>.<\/span>\u00a0<\/span>F<\/span>or those<\/span>\u00a0already<\/span>\u00a0involved in\u00a0<\/span>rare disease\u00a0<\/span>nonprofits, the program also\u00a0<\/span>assists in building\u00a0<\/span>capacity<\/span>, including<\/span>\u00a0<\/span>implement<\/span>ing<\/span>\u00a0good governance practices to ensure\u00a0<\/span>sustainable\u00a0<\/span>growth<\/span>.<\/span>\u00a0<\/span>Research Ready<\/span><\/i><\/b>\u00a0<\/span>educates and e<\/span>nables<\/span>\u00a0<\/span>established\u00a0<\/span>patient\u00a0<\/span>organizations\u00a0<\/span>to prepare<\/span>\u00a0for scientific research<\/span>\u00a0via\u00a0<\/span>the creation of\u00a0<\/span>rare disease registries<\/span>, so they can effectively support research and development<\/span>\u00a0in their disease-specific area<\/span>.\u00a0<\/span>\u00a0<\/span><\/p>\n

\u201c<\/span>The RareLaunch program is\u00a0<\/span>central to<\/span>\u00a0<\/span>NORD\u2019s<\/span>\u00a0mission<\/span>\u00a0and history<\/span>\u2014<\/span>c<\/span>ommunity engagement and capacity<\/span>\u00a0<\/span>building are in\u00a0<\/span>our<\/span>\u00a0DNA. Our organi<\/span>zation<\/span>\u00a0was formed through a grassroots advocacy campaign to bring\u00a0<\/span>rare disease\u00a0<\/span>patients and families together\u00a0<\/span>to fight\u00a0<\/span>for a brighter future<\/span>,\u201d said Pamela Gavin, NORD\u2019s Chief Strategy Officer. \u201c<\/span>And although the means by which we connect and communicate ha<\/span>ve<\/span>\u00a0changed since 1983, the\u00a0<\/span>need\u00a0<\/span>to<\/span>\u00a0help foster<\/span>\u00a0the creation of\u00a0<\/span>even more\u00a0<\/span>disease-specific patient organizations<\/span>\u00a0and\u00a0<\/span>support\u00a0<\/span>therapeutic research<\/span>\u00a0remain<\/span>s<\/span>.\u00a0<\/span>Through<\/span>\u00a0<\/span>RareLaunch<\/span>, NORD<\/span>\u00a0provides skills and tools\u00a0<\/span>to help<\/span>\u00a0make that progress a reality.<\/span>\u201d<\/span>\u00a0<\/span><\/p>\n

NORD\u00a0<\/span>will host free\u00a0RareLaunch\u00a0training workshops<\/span>\u00a0<\/span>where\u00a0<\/span>r<\/span>egistrants\u00a0<\/span>may\u00a0<\/span>attend one or both of the four<\/span>–<\/span>hour virtual training sessions<\/span>:<\/span>\u00a0<\/span><\/p>\n

On December 2,\u00a0<\/span>1:00-5:00pm ET<\/span>,\u00a0<\/span>the\u00a0<\/span>Forming a Foundation<\/span><\/b>\u00a0workshop will\u00a0<\/span>provide assistance<\/span>\u00a0with overcoming the obstacles to starting a nonprofit<\/span>.\u00a0<\/span>Authorities\u00a0<\/span>in<\/span>\u00a0governance\u00a0<\/span>will join<\/span>\u00a0those who have develop<\/span>ed<\/span>\u00a0a nonprofit for their rare disease\u00a0<\/span>to\u00a0<\/span>present on\u00a0<\/span>cultivating<\/span>\u00a0<\/span>community when your\u00a0<\/span>rare disease\u00a0<\/span>population is small,\u00a0<\/span>f<\/span>undraising without a 501(c)(3), developing a\u00a0<\/span>b<\/span>oard<\/span>\u00a0<\/span>and growing your nonprofit.<\/span>\u00a0<\/span>\u00a0<\/span><\/p>\n

On December 3, 1:00-5:00pm ET, the\u00a0<\/span>Research Ready<\/span><\/b>\u00a0<\/span>workshop will feature a keynote from\u00a0<\/span>Dr. Christopher Austin<\/span>, Director of\u00a0<\/span>the National Institutes of Health<\/span>\u2019s\u00a0<\/span>National Center for Advancing Translational Sciences<\/span>\u00a0<\/span>(<\/span>NCATS<\/span>)<\/span>.<\/span>\u00a0<\/span>Leading subject experts will provide\u00a0<\/span>guidance\u00a0<\/span>on\u00a0<\/span>establishing and funding a research program and natural history study,\u00a0<\/span>collaborating with scientists and\u00a0<\/span>industry<\/span> stakeholders<\/span>\u00a0<\/span>and more.<\/span>\u00a0<\/span><\/p>\n

Registration for the RareLaunch workshops can be found\u00a0<\/span>here<\/span><\/a>. For more information on the RareLaunch program<\/span>,<\/span>\u00a0<\/span>its\u00a0<\/span>growing\u00a0<\/span>resources<\/span>\u00a0and\u00a0<\/span>upcoming offerings, please visit<\/span>\u00a0<\/span>the\u00a0<\/span>website<\/span><\/a>.<\/span>\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Washington, DC, October\u00a028, 2020—As part of\u00a0its commitment to\u00a0community engagement and organizational capacity building,\u00a0the National Organization for Rare Disorders\u2019\u00a0(NORD\u00ae)\u00a0RareLaunch\u00ae\u00a0training\u00a0program\u00a0will host\u00a0two days of\u00a0free\u00a0workshops\u00a0to take place in December,\u00a0funded in part through a grant … <\/p>\n

Continue reading “NORD Announces\u00a0RareLaunch\u00a0Workshops\u00a0to Support Those Seeking to Start Rare Disease Nonprofits or Research Programs\u00a0“<\/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":[232,190,192,504,2405,193],"tags":[2536,2331,2535,2533,1503,498,803,2532,2534,2531],"class_list":["post-59208","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-featured-news","category-patients-members","category-press-releases","category-rarelaunch","category-research","tag-501c3","tag-chan-zuckerberg-initiative","tag-dr-christopher-austin","tag-forming-a-foundation","tag-national-center-for-advancing-translational-sciences","tag-national-institutes-of-health","tag-pamela-gavin","tag-rarelaunch","tag-research-ready","tag-silicon-valley-community-foundation"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59208","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=59208"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59208\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59208"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59208"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59208"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}