{"id":59103,"date":"2020-03-03T13:00:22","date_gmt":"2020-03-03T18:00:22","guid":{"rendered":"https:\/\/rarediseases.org\/nord-announces-sing-me-a-story-raffle-for-upcoming-living-rare-living-stronger-patient-and-family-forum\/"},"modified":"2020-03-03T13:00:22","modified_gmt":"2020-03-03T18:00:22","slug":"nord-announces-sing-me-a-story-raffle-for-upcoming-living-rare-living-stronger-patient-and-family-forum","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-announces-sing-me-a-story-raffle-for-upcoming-living-rare-living-stronger-patient-and-family-forum\/","title":{"rendered":"NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum"},"content":{"rendered":"
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\"\"<\/a>NORD is proud to welcome\u00a0Sing Me a Story<\/a>\u00a0to the upcoming\u00a02020 Living Rare, Living Stronger Forum<\/a>\u00a0in Cleveland, Ohio, where\u00a0the\u00a0ideas of children living with rare diseases will be turned into song!\u00a0This opportunity is supported by Horizon Therapeutics\u2019 #RAREis<\/em> program.<\/p>\n

NORD will spotlight one child\u2019s story at the Living Rare Forum welcome reception on Saturday, July 18 with a musician who will perform a song from this story during our welcome reception. This child will be randomly selected from eligible entries via a raffle, please see below.<\/em><\/strong><\/p>\n

In addition, all children aged 3-17 and under attending the Forum\u00a0will be invited to write and illustrate their stories about anything they want\u00a0with Sing Me A Story staff.\u00a0Sing Me A Story will then work to match their\u00a0stories with musicians to set them\u00a0to music and make songs of their ideas.<\/p>\n

Would you and your child like to be spotlighted?<\/strong><\/p>\n

The Sing Me a Story\u00a0spotlight raffle winner and up to three family members will receive travel, accommodations and registration to the Living Rare, Living Stronger Forum\u00a0to experience\u00a0their story performed\u00a0live on stage.<\/p>\n

To be considered, you and your child living with a rare disease must be available and able to travel to Cleveland from July 18 – 20 for the Living Rare Forum. You must also grant permission to share your story and to be available during March or April for a half-day session for Sing Me a Story and NORD along with a film crew, to film in your home to capture the experience.<\/p>\n

The winning family will be selected during a raffle to take place in March.<\/p>\n

ENTER THE SING ME A STORY SPOTLIGHT RAFFLE<\/strong><\/p>\n

This raffle has closed for submissions.<\/em><\/p>\n

 <\/p>\n

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Editor\u2019s Note: The health and safety of the rare disease community is always our top priority at NORD. With that in mind,\u00a0the\u00a0Living Rare, Living Stronger NORD Patient and Family Forum<\/a> will no longer be held on May 14 -16.<\/strong> NORD tentatively postponed the event to July 18 – 20. This article was updated on Tuesday, March 17, 2020 to reflect these changes.<\/em><\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

NORD is proud to welcome\u00a0Sing Me a Story\u00a0to the upcoming\u00a02020 Living Rare, Living Stronger Forum\u00a0in Cleveland, Ohio, where\u00a0the\u00a0ideas of children living with rare diseases will be turned into song!\u00a0This opportunity … <\/p>\n

Continue reading “NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":12839,"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":[503,662,192],"tags":[1910,1816,2213],"class_list":["post-59103","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-get-involved","category-patients-members","tag-living-rare-forum","tag-living-rare-living-stronger","tag-sing-me-a-song"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59103","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=59103"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59103\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12839"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59103"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59103"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59103"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}