{"id":58610,"date":"2015-08-03T17:27:30","date_gmt":"2015-08-03T21:27:30","guid":{"rendered":"https:\/\/rarediseases.org\/member-spotlight-cloves-syndrome-community\/"},"modified":"2015-08-03T17:27:30","modified_gmt":"2015-08-03T21:27:30","slug":"member-spotlight-cloves-syndrome-community","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/member-spotlight-cloves-syndrome-community\/","title":{"rendered":"Member Spotlight: CLOVES Syndrome Community"},"content":{"rendered":"<div>\n<p>The mission of CLOVES Syndrome Community (CSC) is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. Its vision is to have an improved quality of life for people with CLOVES syndrome.<\/p>\n<p><strong>1.) What does it mean to you personally to be a patient organization serving the rare community?<\/strong><\/p>\n<\/div>\n<div>I started this organization back in 2009, when my daughter was diagnosed with <span class=\"il\">CLOVES<\/span> Syndrome.\u00a0 At that time, there were no resources for families and children with <span class=\"il\">CLOVES<\/span>.\u00a0 I created an organization (that was exactly what I was looking for in terms of support and education) but that didn&#8217;t exist when my daughter was diagnosed.\u00a0 I \u00a0take great pride in the rapid growth of the organization and opportunities we have created for people with<span class=\"il\">CLOVES<\/span> in such a short window of time.\u00a0 I am so grateful that newly diagnosed families now have a space to land for support and resources.<\/div>\n<div><\/div>\n<div>\n<p><strong>2.) What do you find your patient community values most from your organization?<\/strong><\/p>\n<\/div>\n<div>Support, information\/education, resources, research opportunities and our family conference which happens every other year.<\/div>\n<div><\/div>\n<div>\n<p><strong>3.) What are some of the challenges your organization has faced?<\/strong><\/p>\n<\/div>\n<div>Explaining such a rare and complex disease in a user-friendly way.\u00a0 Fundraising.<\/div>\n<div><\/div>\n<div>\n<p><strong>4.) What has been your most successful awareness campaign and\/or fundraising event?<\/strong><\/p>\n<\/div>\n<div>Hmmmm&#8230;&#8230;not sure.\u00a0 We do an annual direct appeal mailing.\u00a0 And we&#8217;ve held a few local fundraisers in ME, RI and OK.<\/div>\n<div><\/div>\n<div><\/div>\n<div>\n<div class=\"po-box\">\n<h4>Address<\/h4>\n<p>PO Box 406<br \/>\nWest Kennebunk, ME 04094<\/p>\n<\/div>\n<div class=\"po-box\">\n<h4>Phone<\/h4>\n<p>(207) 281-2130<\/p>\n<\/div>\n<div class=\"po-box\">\n<h4>Email Address<\/h4>\n<p><a href=\"mailto:clovessyndrome@gmail.com\">clovessyndrome@gmail.com<\/a><\/p>\n<\/div>\n<div class=\"po-box\">\n<h4>Website<\/h4>\n<p><a href=\"https:\/\/www.clovessyndrome.org\/\" target=\"_blank\" rel=\"noopener nofollow\">https:\/\/www.clovessyndrome.org<\/a><\/p>\n<\/div>\n<\/div>\n<div><\/div>\n<div><\/div>\n<div><em>NORD is excited to be putting the spotlight on CLOVES Syndrome Community\u00a0this week! Stay tuned for posts about CLOVES Syndrome Community\u00a0on NORD social media throughout the week. If you would like your NORD Member Organization to be in the spotlight for the week, email your NORD Membership Manager for more information.\u00a0<\/em><\/div>\n<div><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Supporting, educating, empowering and improving the lives of those affected by CLOVES syndrome. .<\/p>\n","protected":false},"author":1,"featured_media":11933,"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":[190],"tags":[675,674,600],"class_list":["post-58610","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-news","tag-cloves-syndrome","tag-cloves-syndrome-community","tag-member-spotlight"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58610","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=58610"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58610\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/11933"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58610"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58610"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58610"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}