{"id":59318,"date":"2020-09-23T08:00:00","date_gmt":"2020-09-23T12:00:00","guid":{"rendered":"https:\/\/rarediseases.org\/telehealth-a-lifesaver-for-one-rare-disease-family\/"},"modified":"2020-09-23T08:00:00","modified_gmt":"2020-09-23T12:00:00","slug":"telehealth-a-lifesaver-for-one-rare-disease-family","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/telehealth-a-lifesaver-for-one-rare-disease-family\/","title":{"rendered":"Telehealth: A Lifesaver For One Rare Disease Family"},"content":{"rendered":"

On today’s show, host Matthew Zachary<\/a> welcome parents Alice Alpert<\/a> and Edgar Wonzica<\/a> to share their story of entering the rare disease community by way of their beautiful son Leo being born with Treacher Collins syndrome, a very rare genetic disorder with fewer than 20,000 US cases per year. Edgar, a practicing psychiatrist with a background in climate science, and his wife Alice, a foreign affairs officer for the US Department of State, with a background in paleoceanography, found themselves navigating a foreign land but found support and community from the rare disease community. \u2014\u2014 With an added boost from the modern-day benefits that Telehealth can bring. This episode is a truly inspiring story of love and hope when sometimes all you need to hear is, “Your baby is going to be just fine.” Enjoy the show.<\/p>\n

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Be sure to listen, download and subscribe!<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

On today’s show, host Matthew Zachary welcome parents Alice Alpert and Edgar Wonzica to share their story of entering the rare disease community by way of their beautiful son Leo … <\/p>\n

Continue reading “Telehealth: A Lifesaver For One Rare Disease Family”<\/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":[],"tags":[2803,2229,2804,1814,2802,2799,1333,1278,225,2805,360,798,2046,2045,797,315,209,219,228,2798,2800,2399,1521,1334,2801],"class_list":["post-59318","post","type-post","status-publish","format-standard","hentry","tag-community","tag-covid-19","tag-digital-health","tag-living-rare","tag-living-strong","tag-matthew-zachary","tag-mike-porath","tag-national-organization-for-rare-disorders","tag-nord","tag-nordpod","tag-peter-saltonstall","tag-rare-cancer","tag-rare-cancer-coalition","tag-rare-cancer-day","tag-rare-cancers","tag-rare-disease","tag-rare-disease-community","tag-rare-disease-day","tag-rare-diseases","tag-stupid-cancer","tag-stupid-cancer-show","tag-telehealth","tag-telemedicine","tag-the-mighty","tag-voice-of-rare-disease"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59318","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=59318"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59318\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59318"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59318"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59318"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}