{"id":58799,"date":"2016-12-22T22:17:42","date_gmt":"2016-12-23T03:17:42","guid":{"rendered":"https:\/\/rarediseases.org\/family-moves-across-state-lines-to-receive-better-access\/"},"modified":"2016-12-22T22:17:42","modified_gmt":"2016-12-23T03:17:42","slug":"family-moves-across-state-lines-to-receive-better-access","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/family-moves-across-state-lines-to-receive-better-access\/","title":{"rendered":"Family Moves Across State Lines to Receive Better Access"},"content":{"rendered":"
\"Gabby
Gabby was born with the rare condition vanishing gastroschisis and lives with short bowel syndrome.<\/figcaption><\/figure>\n

Today we are sharing the story of one little girl who, by the age of three-months old, had faced surgery, an investigational\u00a0treatment, and a near-fatal infection.\u00a0 When Gabby<\/span> was born with the rare disorder known as vanishing gastroschisis, her family was forced to contend with mounting medical bills, inadequate insurance coverage, and endless barriers to access of a state Medicaid waiver. Ultimately, they moved far from their home state and families for better access to services.<\/p>\n

T<\/b>here are millions of people, like Gabby<\/span> and her family, who benefit when you<\/u> take action in the fight to improve diagnosis, treatments and cures for rare diseases.<\/b><\/p>\n

Please Donate Today<\/a><\/strong><\/p>\n

While each family\u2019s experience with a rare disease is unique, no one should have to feel alone in their journey.\u00a0We first met Gabby<\/span> and her mom, Tammy, when they attended a NORD patient meeting for Short Bowel Syndrome, Gabby<\/span>\u2019s lifelong medical condition. Today, Tammy is an active rare disease advocate, joining NORD and a growing network of advocates to ensure that the voices of the rare disease community are heard.<\/p>\n

The recent launch of NORD\u2019s Rare Action Network<\/a>\u00a0unites the community and provides everyday\u00a0people with avenues for raising awareness about the unmet needs of those who are battling rare diseases. Together, we can drive policy changes on Capitol Hill and in all 50 states to make rare diseases a national\u00a0priority.<\/p>\n

Please consider making a tax-deductible gift<\/a>\u00a0to support NORD\u2019s mission to help 30 million Americans with rare diseases.\u00a0 Together we are strong, with patients and families like Gabby<\/span>\u2019s, whose stories compel us to advocate for even greater change in 2017.<\/b><\/p>\n

Please Donate Today<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

Today we are sharing the story of one little girl who, by the age of three-months old, had faced surgery, an investigational\u00a0treatment, and a near-fatal infection.\u00a0 When Gabby was born … <\/p>\n

Continue reading “Family Moves Across State Lines to Receive Better Access”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":12343,"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":[190,662,505],"tags":[715,1344,1346,526,1345],"class_list":["post-58799","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-news","category-get-involved","category-patient-stories","tag-donate","tag-dr-m-kathryn-liszewski","tag-fdara","tag-rare-action-network","tag-rare-genetic-disease"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58799","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=58799"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58799\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12343"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58799"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58799"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58799"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}