{"id":2294,"date":"2025-04-10T11:18:31","date_gmt":"2025-04-10T15:18:31","guid":{"rendered":"https:\/\/www.med.unc.edu\/raredisease\/?page_id=2294"},"modified":"2026-03-02T11:34:18","modified_gmt":"2026-03-02T16:34:18","slug":"for-patients","status":"publish","type":"page","link":"https:\/\/www.med.unc.edu\/raredisease\/for-patients\/","title":{"rendered":"For Patients"},"content":{"rendered":"<h1>What to expect while you\u2019re looking for or have just received a diagnosis:<\/h1>\n<p>For many parents, the diagnosis of a child with a rare disease can be an overwhelming time. While a lot of parents dive right into medical reports and patient support groups, others require time to process these complex emotions before being able to process new information about the rare disease. This is often a time of significant adjustment to new expectations and concerns while also having to absorb lots of new and complex information.<\/p>\n<p>We recommend that you <strong>take time to care for yourself<\/strong> and lean on support from family and friends.<br \/>\nAdditionally, the following\u00a0<strong>C.A.R.E. <\/strong>strategies can help you feel more prepared:<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-2601\" src=\"https:\/\/www.med.unc.edu\/raredisease\/wp-content\/uploads\/sites\/1455\/2025\/05\/CARE-Graphic.png\" alt=\"\" width=\"906\" height=\"583\" srcset=\"https:\/\/www.med.unc.edu\/raredisease\/wp-content\/uploads\/sites\/1455\/2025\/05\/CARE-Graphic.png 2926w, https:\/\/www.med.unc.edu\/raredisease\/wp-content\/uploads\/sites\/1455\/2025\/05\/CARE-Graphic-300x193.png 300w, https:\/\/www.med.unc.edu\/raredisease\/wp-content\/uploads\/sites\/1455\/2025\/05\/CARE-Graphic-1024x659.png 1024w, https:\/\/www.med.unc.edu\/raredisease\/wp-content\/uploads\/sites\/1455\/2025\/05\/CARE-Graphic-768x494.png 768w, https:\/\/www.med.unc.edu\/raredisease\/wp-content\/uploads\/sites\/1455\/2025\/05\/CARE-Graphic-1536x988.png 1536w, https:\/\/www.med.unc.edu\/raredisease\/wp-content\/uploads\/sites\/1455\/2025\/05\/CARE-Graphic-2048x1317.png 2048w, https:\/\/www.med.unc.edu\/raredisease\/wp-content\/uploads\/sites\/1455\/2025\/05\/CARE-Graphic-600x386.png 600w\" sizes=\"auto, (max-width: 906px) 100vw, 906px\" \/><\/p>\n<p style=\"text-align: left;padding-left: 40px\"><strong>(C) Centralize Health Information:<\/strong><\/p>\n<ul>\n<li style=\"list-style-type: none\">\n<ul style=\"text-align: left\">\n<li>Keep track of your health information in a centralized, easily accessible location. This might be a notebook or a binder.<\/li>\n<li>Avoid relying solely on online health apps, as they may not fully capture the complexity of rare diseases.<\/li>\n<li>Facilitate communication between multiple providers, especially if you are seen across different health systems.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p style=\"text-align: left;padding-left: 40px\"><strong>(A) Ask Questions:<\/strong><\/p>\n<ul>\n<li style=\"list-style-type: none\">\n<ul style=\"text-align: left\">\n<li>Write down questions or concerns as they come up so you don&#8217;t forget about them during medical appointments.<\/li>\n<li>Recognize that stress, fatigue, or family responsibilities can make it difficult to remember your thoughts later.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p style=\"text-align: left;padding-left: 40px\"><strong>(R) Rehearse Responses:<\/strong><\/p>\n<ul>\n<li style=\"list-style-type: none\">\n<ul style=\"text-align: left\">\n<li>Practice with family members how you want to respond to questions regarding you or your child.<\/li>\n<li>Decide in advance how much information you wish to share, especially when faced with insensitive or intrusive questions.<\/li>\n<li>Remember: You are not obligated to explain anything.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p style=\"padding-left: 120px;text-align: left\"><strong>For Pediatric Patients:<\/strong><\/p>\n<ul>\n<li style=\"list-style-type: none\">\n<ul>\n<li style=\"list-style-type: none\">\n<ul>\n<li style=\"list-style-type: none\">\n<ul>\n<li>Involve your child over time in understanding their diagnosis and care.<\/li>\n<li>Ask about child life specialists &#8211; they can support your child and their siblings in learning about the condition in age-appropriate ways.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p style=\"text-align: left;padding-left: 40px\"><strong>(E) Educate Schools &amp; Daycare Teams:<\/strong><\/p>\n<p style=\"padding-left: 120px;text-align: left\"><strong>For Pediatric Patients:<\/strong><\/p>\n<ul>\n<li style=\"list-style-type: none\">\n<ul>\n<li style=\"list-style-type: none\">\n<ul>\n<li style=\"list-style-type: none\">\n<ul>\n<li style=\"text-align: left\">Consult your medical team for guidance on how to explain your child&#8217;s needs to school or daycare staff.<\/li>\n<li style=\"text-align: left\">Proactive communication with educators can help ensure your child&#8217;s environment is supportive and safe.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<h2>Patient Resources:<\/h2>\n<div role=\"tablist\" class=\"panel-group edge oscitas-bootstrap-container\" id=\"unc-accordion-0\">\n\n<div class=\"panel panel-default oscitas-bootstrap-container\">\n\n    <div id=\"panel-heading-details-0-0\" class=\"panel-heading oscitas-bootstrap-container\" role=\"tab\">\n\n        <h3 class=\"panel-title oscitas-bootstrap-container\">\n\n            <button class=\"accordion-toggle oscitas-bootstrap-container collapsed\" \n                id = \"button-details-0-0\"\n                data-toggle=\"collapse\"\n                data-parent=\"#unc-accordion-0\"    \n                aria-controls=\"#details-0-0\"  \n                aria-expanded=\"false\" \n                href=\"#details-0-0\">\n                List of Specialty Clinics at UNC            <\/button>\n\n        <\/h3>\n\n    <\/div>\n\n    <div id=\"details-0-0\" class=\"panel-collapse collapse  oscitas-bootstrap-container\">\n\n        <div class=\"panel-body oscitas-bootstrap-container\">The<a href=\"https:\/\/www.med.unc.edu\/raredisease\/for-health-care-professionals\/specialty-clinics-at-unc\/\"> Specialty Clinics at UNC<\/a> list includes a directory for existing specialty care and multidisciplinary clinics at UNC. <\/div>\n\n    <\/div>\n        \n<\/div>\n\n<div class=\"panel panel-default oscitas-bootstrap-container\">\n\n    <div id=\"panel-heading-details-0-1\" class=\"panel-heading oscitas-bootstrap-container\" role=\"tab\">\n\n        <h3 class=\"panel-title oscitas-bootstrap-container\">\n\n            <button class=\"accordion-toggle oscitas-bootstrap-container collapsed\" \n                id = \"button-details-0-1\"\n                data-toggle=\"collapse\"\n                data-parent=\"#unc-accordion-0\"    \n                aria-controls=\"#details-0-1\"  \n                aria-expanded=\"false\" \n                href=\"#details-0-1\">\n                Patient Advocacy Groups            <\/button>\n\n        <\/h3>\n\n    <\/div>\n\n    <div id=\"details-0-1\" class=\"panel-collapse collapse  oscitas-bootstrap-container\">\n\n        <div class=\"panel-body oscitas-bootstrap-container\"> Visit our <a href=\"https:\/\/www.uncchildrens.org\/uncmc\/unc-childrens\/patients-family\/family-partners-program\/\">Family Partners Program<\/a>\u00a0page, which provides information about joining our UNC Council.<\/p>\n<p>The Family Advisory Council (FAC) allows patient families to voice their opinions and provide feedback to hospital leaders on various projects, policies, and programs. FAC members are caregivers whose children have received care at UNC. The council also includes UNC staff from different disciplines who are dedicated to delivering family-centered care. The Family Advisory Council convenes monthly from September through June. Participating in focus groups: Family Partners have the opportunity to participate in focus groups to give feedback or suggest solutions for the planning of our new children\u2019s hospital.<\/p>\n<p>Additionally, families can contact Logan Blinman at <a href=\"mailto:familypartners@med.unc.edu\"><strong>familypartners@med.unc.edu<\/strong><\/a>. <\/div>\n\n    <\/div>\n        \n<\/div>\n\n<div class=\"panel panel-default oscitas-bootstrap-container\">\n\n    <div id=\"panel-heading-details-0-2\" class=\"panel-heading oscitas-bootstrap-container\" role=\"tab\">\n\n        <h3 class=\"panel-title oscitas-bootstrap-container\">\n\n            <button class=\"accordion-toggle oscitas-bootstrap-container collapsed\" \n                id = \"button-details-0-2\"\n                data-toggle=\"collapse\"\n                data-parent=\"#unc-accordion-0\"    \n                aria-controls=\"#details-0-2\"  \n                aria-expanded=\"false\" \n                href=\"#details-0-2\">\n                National Organization for Rare Disorders (NORD) Center of Excellence            <\/button>\n\n        <\/h3>\n\n    <\/div>\n\n    <div id=\"details-0-2\" class=\"panel-collapse collapse  oscitas-bootstrap-container\">\n\n        <div class=\"panel-body oscitas-bootstrap-container\"> <a href=\"https:\/\/rarediseases.org\/events\/\">NORD Events<\/a><br \/>\nVarious NORD events, from state-level to national events happening.<\/p>\n<p><a href=\"https:\/\/rarediseases.org\/living-with-a-rare-disease\/how-nord-can-help\/\">NORD Resources<\/a><br \/>\nGeneral overview of NORD resources for patients with rare diseases, including how to access financial help.<\/p>\n<p><a href=\"https:\/\/rarediseases.org\/living-with-a-rare-disease\/getting-help-and-support\/\">NORD FAQ\u2019s<\/a><br \/>\nFAQ\u2019s including topics such as \u201cWhat is a rare disease?\u201d, \u201cWhat is Genetic Counseling\u201d, and \u201cWhat are Orphan Drugs?\u201d<\/p>\n<p><a href=\"https:\/\/www.claimyourcare.org\">NORD Health Coverage Literacy Assistance<\/a><br \/>\n<span style=\"font-family: arial, sans-serif\">This is a new NORD website\u00a0<\/span>designed to enhance health coverage literacy. It will help rare disease Patient Advocacy Groups (PAGs), patients, and caregivers better understand and navigate health insurance and coverage-related challenges.<\/p>\n<p><a href=\"https:\/\/rarediseases.org\/patient-organizations\/\">NORD Patient Organizations<\/a><br \/>\nDatabase to search for different patient organizations.<\/p>\n<p><a href=\"https:\/\/rareaction.org\/resources-for-advocates\/state-profiles\/north%20carolina\/\">NORD Rare Action Network<\/a><br \/>\nNC-specific information, including the patient advocacy arm of NORD and the NC State Ambassador, Patricia Sullivan.<\/p>\n<p><a href=\"https:\/\/rarediseases.org\/clinicians-researchers\/\">NORD Resources for Clinicians and Researchers<\/a><br \/>\nGeneral page for clinicians\/researchers.<\/p>\n<p><a href=\"https:\/\/rarediseases.org\/nord-en-espanol\/\">NORD Spanish Language Page<\/a><br \/>\nNORD Spanish-language page. <\/div>\n\n    <\/div>\n        \n<\/div>\n\n<div class=\"panel panel-default oscitas-bootstrap-container\">\n\n    <div id=\"panel-heading-details-0-3\" class=\"panel-heading oscitas-bootstrap-container\" role=\"tab\">\n\n        <h3 class=\"panel-title oscitas-bootstrap-container\">\n\n            <button class=\"accordion-toggle oscitas-bootstrap-container collapsed\" \n                id = \"button-details-0-3\"\n                data-toggle=\"collapse\"\n                data-parent=\"#unc-accordion-0\"    \n                aria-controls=\"#details-0-3\"  \n                aria-expanded=\"false\" \n                href=\"#details-0-3\">\n                Want to Get Involved in Research at UNC?            <\/button>\n\n        <\/h3>\n\n    <\/div>\n\n    <div id=\"details-0-3\" class=\"panel-collapse collapse  oscitas-bootstrap-container\">\n\n        <div class=\"panel-body oscitas-bootstrap-container\"> <a href=\"https:\/\/researchforme.unc.edu\/index.php\/en\/\">UNC Research for Me<\/a> is dedicated to connecting you with research opportunities at UNC-Chapel Hill, UNC Health, and across North Carolina. <\/div>\n\n    <\/div>\n        \n<\/div>\n\n<div class=\"panel panel-default oscitas-bootstrap-container\">\n\n    <div id=\"panel-heading-details-0-4\" class=\"panel-heading oscitas-bootstrap-container\" role=\"tab\">\n\n        <h3 class=\"panel-title oscitas-bootstrap-container\">\n\n            <button class=\"accordion-toggle oscitas-bootstrap-container collapsed\" \n                id = \"button-details-0-4\"\n                data-toggle=\"collapse\"\n                data-parent=\"#unc-accordion-0\"    \n                aria-controls=\"#details-0-4\"  \n                aria-expanded=\"false\" \n                href=\"#details-0-4\">\n                Where To Stay?            <\/button>\n\n        <\/h3>\n\n    <\/div>\n\n    <div id=\"details-0-4\" class=\"panel-collapse collapse  oscitas-bootstrap-container\">\n\n        <div class=\"panel-body oscitas-bootstrap-container\"> Medstay is a third party company that helps patients and families book personalized hotel reservations at the very lowest medical hotel rates available. For more information, please visit their <a href=\"https:\/\/medstay.com\/\">website<\/a> or reach out to them at (877) 633-7829 or info@medstay.com.<\/p>\n<p>PLEASE NOTE: UNC does not directly endorse nor is responsible for any transactions \/ encounters with the listed companies. Medstay affiliated hotels are listed here for your convenience only. Please contact Medstay or the individual hotels directly.<\/p>\n<p>For more information on hotels near UNC Hospital, please visit the <a href=\"https:\/\/www.uncmedicalcenter.org\/uncmc\/patients-visitors\/family-resource-guide\/\">Family Resource Guide<\/a>.<\/p>\n<\/div>\n\n    <\/div>\n        \n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>What to expect while you\u2019re looking for or have just received a diagnosis: For many parents, the diagnosis of a child with a rare disease can be an overwhelming time. While a lot of parents dive right into medical reports and patient support groups, others require time to process these complex emotions before being able &hellip; <a href=\"https:\/\/www.med.unc.edu\/raredisease\/for-patients\/\" aria-label=\"Read more about For Patients\">Read more<\/a><\/p>\n","protected":false},"author":85590,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"templates\/front-page.php","meta":{"_acf_changed":false,"layout":"","cellInformation":"","apiCallInformation":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-2294","page","type-page","status-publish","hentry","odd"],"acf":[],"_links_to":[],"_links_to_target":[],"_links":{"self":[{"href":"https:\/\/www.med.unc.edu\/raredisease\/wp-json\/wp\/v2\/pages\/2294","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.med.unc.edu\/raredisease\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.med.unc.edu\/raredisease\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.med.unc.edu\/raredisease\/wp-json\/wp\/v2\/users\/85590"}],"replies":[{"embeddable":true,"href":"https:\/\/www.med.unc.edu\/raredisease\/wp-json\/wp\/v2\/comments?post=2294"}],"version-history":[{"count":50,"href":"https:\/\/www.med.unc.edu\/raredisease\/wp-json\/wp\/v2\/pages\/2294\/revisions"}],"predecessor-version":[{"id":3164,"href":"https:\/\/www.med.unc.edu\/raredisease\/wp-json\/wp\/v2\/pages\/2294\/revisions\/3164"}],"wp:attachment":[{"href":"https:\/\/www.med.unc.edu\/raredisease\/wp-json\/wp\/v2\/media?parent=2294"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}