{"id":1619,"date":"2021-08-24T14:22:02","date_gmt":"2021-08-24T14:22:02","guid":{"rendered":"https:\/\/alfevents.org\/rare-disease-summit\/?page_id=1619"},"modified":"2022-06-27T21:46:01","modified_gmt":"2022-06-27T21:46:01","slug":"event-details","status":"publish","type":"page","link":"https:\/\/alfevents.org\/rare-disease-summit\/event-details\/","title":{"rendered":"Event Details"},"content":{"rendered":"\t\t
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General Details<\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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DATES: <\/strong>Tuesday,\u00a0<\/strong>June 28th and Wednesday, June 29th\u00a0
TIME:\u00a0<\/strong>1pm-3:30pm EST

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ZOOM LINK: Please register to receive the Zoom Link.\u00a0<\/strong><\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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ALF will bring together rare liver disease stakeholders \u2013 patients, caregivers, hepatologists, primary care providers, patient advocacy organization personnel, and industry representatives \u2013 for a four-hour virtual Summit to identify solutions for improving the health outcomes of individuals with rare liver diseases. This meeting will focus on answering the following questions:<\/span><\/p>

  1. How can people avoid misdiagnosis\/achieve earlier diagnosis?<\/li>
  2. How can we educate more people about genetic testing and best address concerns about stigmatization?<\/li>
  3. How can we reduce the patient burden and improve the overall patient experience?<\/li>
  4. Can telemedicine play a role?<\/li><\/ol>

    We will also explore patients\u2019 and caregivers\u2019 views on currently available treatment options, daily functioning\/quality of life issues, telemedicine, care coordination, and the liver transplantation process. To facilitate the discussion, we will engage a communications consultant with a high level of knowledge of rare liver diseases as well as experience moderating thought leader meetings and providing qualitative analysis.<\/p>

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    \n\t\t\t\t\t\t\t<\/i>\t\t\t\t\t\t\tPrevious<\/span>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t
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    Rare Disease Summit Agenda <\/h2>\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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    Day One- June 28th<\/sup><\/u><\/strong><\/p>

    1:00pm<\/b> \u2013 Welcome

    1:05pm –\u00a0 <\/b>Opening Remarks: Dr. Theo Heller

    1:05pm<\/b> \u2013 Featured Speakers: Dr. Theo Heller + Patient Advocates

    2:00pm<\/b> \u2013 Break Out Session Led by: Dr. Nehna Abdul Majeed and Dr. Asif Hitawala

    This breakout session will address the following questions:<\/b><\/p>

    1. How can people avoid misdiagnosis\/achieve earlier diagnosis<\/i><\/span><\/li>
    2. How can we educate more people about genetic testing and best address concerns about stigmatization?<\/i><\/span><\/li><\/ol>

      2:40pm<\/b> \u2013 Group Discussion

      3:00pm<\/b> \u2013 Closing<\/p>

      Day Two- June 29th<\/sup><\/u><\/strong><\/p>

      1:00pm \u2013 <\/b>Welcome

      1:05pm –\u00a0<\/b>Opening Remarks: Dr. Strazzabosco

      1:10pm \u2013 <\/b>Panel Discussion featuring:\u00a0Dr. Asai Aki, Cincinnati Children\u2019s Hospital,\u00a0<\/span>Dane Christiansen, Managing Partner at Health, and Medical Counsel, LCC,\u00a0<\/span>Joanne Hatchett, Medical Science Liaison at PSC Partners Seeking a Cure,\u00a0<\/span>Scott Santarella, President, and CEO of Alpha-1 Foundation<\/span>

      2:00pm- <\/b>Break Out Session Led by NIH Fellows: Dr. Nehna Abdul Majeed and Dr. Asif Hitawala.\u00a0<\/p>

      This breakout session will address the following questions:<\/span><\/b><\/p>

      1. How can we reduce the patient burden and improve the overall patient experience?<\/i><\/li>
      2. How can telemedicine play a role?<\/i><\/li><\/ol>

        2:40pm<\/b> \u2013 Group Discussion

        3:00pm<\/b> – Closing<\/p>

        *Subject to Change<\/p>\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

        General Details DATES: Tuesday,\u00a0June 28th and Wednesday, June 29th\u00a0TIME:\u00a01pm-3:30pm EST Location ZOOM LINK: Please register to receive the Zoom Link.\u00a0 ALF will bring together rare liver disease stakeholders \u2013 patients, caregivers, hepatologists, primary care providers, patient advocacy organization personnel, and industry representatives \u2013 for a four-hour virtual Summit to identify solutions for improving the health outcomes of individuals with rare liver diseases. This meeting will focus on answering the following questions: How can people avoid misdiagnosis\/achieve earlier diagnosis? How can we educate more people about genetic testing and best address concerns about stigmatization? How can we reduce the patient burden\u2026<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-1619","page","type-page","status-publish","hentry"],"blocksy_meta":{"page_title_panel":"","has_hero_section":"default","a973c394aaac5f38b43cb8cc90e7aae8":"","hero_section":"type-2","hero_elements":[{"id":"custom_title","enabled":true,"heading_tag":"h1","title":"Home"},{"id":"custom_description","enabled":true,"description_visibility":{"desktop":true,"tablet":true,"mobile":false}},{"id":"custom_meta","enabled":false,"meta_elements":[{"id":"author","enabled":true,"label":"By","has_author_avatar":"yes","avatar_size":25},{"id":"post_date","enabled":true,"label":"On","date_format_source":"default","date_format":"M j, 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