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X-WR-CALDESC:Events for PFIC
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DTSTART;TZID=UTC:20221112T150000
DTEND;TZID=UTC:20221112T160000
DTSTAMP:20260403T212604
CREATED:20220928T135056Z
LAST-MODIFIED:20220928T135056Z
UID:94925-1668265200-1668268800@www.pfic.org
SUMMARY:Grandparents & Non-Caregiver Support Group
DESCRIPTION:Most of our programs focus on supporting PFIC patients and their caregivers. The impact of PFIC spreads far beyond this group\, though. If you are a non-caregiving relative or close friend of a PFIC patient\, you already know this. This support group is for YOU! We’ve created this group with grandparents in mind\, but all non-caregiving family members and friends are welcome. \nRegister for the session here: https://us06web.zoom.us/meeting/register/tZAtcuytqjotG9S7CETiXzb2BGqaMOZCer6n
URL:https://www.pfic.org/event/grandparents-non-caregiver-support-group-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221210T120000
DTEND;TZID=UTC:20221210T130000
DTSTAMP:20260403T212604
CREATED:20221125T161155Z
LAST-MODIFIED:20221125T161155Z
UID:95413-1670673600-1670677200@www.pfic.org
SUMMARY:Patient Support Group
DESCRIPTION:What the support group is about – The group offers a safe and welcoming space in which PFIC patients can connect with one another\, share their experiences\, and offer one another support. \nWhy it’s important – Having a rare disease can be exhausting\, overwhelming\, and isolating. It’s important to have a space in which you feel seen\, heard\, and valued. Our goal is to make this support group into just such a space\, so that participants leave feeling connected\, understood\, and recharged. \nAll patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZIof-uprzwvH9TwyWR9VkDra2yrkD2cR-DN \nHosted by Lisa Jensen. Read Lisa’s most recent blog post here: What to do when nobody gets it.
URL:https://www.pfic.org/event/patient-support-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221210T133000
DTEND;TZID=UTC:20221210T143000
DTSTAMP:20260403T212604
CREATED:20221125T161326Z
LAST-MODIFIED:20221125T161326Z
UID:95416-1670679000-1670682600@www.pfic.org
SUMMARY:Parent & Caregiver Support Group
DESCRIPTION:What the support group is about – The group offers a safe and welcoming space in which parents and caregivers of PFIC patients can connect with one another\, share their experiences\, and offer one another support. \nWhy it’s important – Parenting a child with a rare disease can be exhausting\, overwhelming\, and isolating. It’s important to have a space in which you feel seen\, heard\, and valued. Our goal is to make this support group into just such a space\, so that participants leave feeling connected\, understood\, and recharged. \nAll parents and caregivers are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZIpcuivrz8qHdUmiVRh6FlFNxiuwR-91TD5 \nRead Lisa’s most recent blog post here: What to do when nobody gets it.
URL:https://www.pfic.org/event/parent-caregiver-support-group-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221210T150000
DTEND;TZID=UTC:20221210T160000
DTSTAMP:20260403T212604
CREATED:20221125T161714Z
LAST-MODIFIED:20221125T161917Z
UID:95418-1670684400-1670688000@www.pfic.org
SUMMARY:Grandparents & Non-Caregiver Support Group
DESCRIPTION:Most of our programs focus on supporting PFIC patients and their caregivers. The impact of PFIC spreads far beyond this group\, though. If you are a non-caregiving relative or close friend of a PFIC patient\, you already know this. This support group is for YOU! We’ve created this group with grandparents in mind\, but all non-caregiving family members and friends are welcome. \nRegister for the session here: https://us06web.zoom.us/meeting/register/tZwvcOipqD8sEteBhsNDdB6FzutC7kSj88vp \n\nHosted by Lisa Jensen. Read Lisa’s most recent blog post here: What to do when nobody gets it.
URL:https://www.pfic.org/event/grandparents-non-caregiver-support-group-3/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230107T120000
DTEND;TZID=UTC:20230107T130000
DTSTAMP:20260403T212604
CREATED:20221230T182555Z
LAST-MODIFIED:20221230T182555Z
UID:95732-1673092800-1673096400@www.pfic.org
SUMMARY:Patient Support Group
DESCRIPTION:What the support group is about – The group offers a safe and welcoming space in which PFIC patients can connect with one another\, share their experiences\, and offer one another support. \nWhy it’s important – Having a rare disease can be exhausting\, overwhelming\, and isolating. It’s important to have a space in which you feel seen\, heard\, and valued. Our goal is to make this support group into just such a space\, so that participants leave feeling connected\, understood\, and recharged. \nAll patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZwscumrpjopHNKQiUCQ9Ngfab5_y7DQBqnO
URL:https://www.pfic.org/event/patient-support-group-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230107T150000
DTEND;TZID=UTC:20230107T160000
DTSTAMP:20260403T212604
CREATED:20221230T182928Z
LAST-MODIFIED:20221230T182928Z
UID:95734-1673103600-1673107200@www.pfic.org
SUMMARY:Grandparent Support Group
DESCRIPTION:Most of our programs focus on supporting PFIC patients and their caregivers. The impact of PFIC spreads far beyond this group\, though. If you are a non-caregiving relative or close friend of a PFIC patient\, you already know this. This support group is for YOU! We’ve created this group with grandparents in mind\, but all non-caregiving family members and friends are welcome. \nRegister for the session here: https://us06web.zoom.us/meeting/register/tZcqcOyhrD8vH90fWFNvhSJAVpWs4iEKvOLj
URL:https://www.pfic.org/event/grandparent-support-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230708T130000
DTEND;TZID=UTC:20230708T140000
DTSTAMP:20260403T212604
CREATED:20230120T151946Z
LAST-MODIFIED:20230627T140534Z
UID:95895-1688821200-1688824800@www.pfic.org
SUMMARY:Parent and Caregiver Support Group
DESCRIPTION:What the support group is about – The group offers a safe and welcoming space in which parents and caregivers of PFIC patients can connect with one another\, share their experiences\, and offer one another support. \nWhy it’s important – Parenting a child with a rare disease can be exhausting\, overwhelming\, and isolating. It’s important to have a space in which you feel seen\, heard\, and valued. Our goal is to make this support group into just such a space\, so that participants leave feeling connected\, understood\, and recharged. \nAll parents and caregivers are invited to join. Register for the session here: Saturday July 8\, 1 PM EST
URL:https://www.pfic.org/event/parent-and-caregiver-support-group-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230708T150000
DTEND;TZID=UTC:20230708T160000
DTSTAMP:20260403T212604
CREATED:20230120T152315Z
LAST-MODIFIED:20230627T140435Z
UID:95897-1688828400-1688832000@www.pfic.org
SUMMARY:Grandparent Support Group
DESCRIPTION:Most of our programs focus on supporting PFIC patients and their caregivers. The impact of PFIC spreads far beyond this group\, though. If you are a non-caregiving relative or close friend of a PFIC patient\, you already know this. This support group is for YOU! We’ve created this group with grandparents in mind\, but all non-caregiving family members and friends are welcome. \nRegister for the session here: https://us06web.zoom.us/meeting/register/tZYlf-uuqTMoGdcdRROo8-ZyhoZMRSZR4ldR
URL:https://www.pfic.org/event/grandparent-support-group-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230819T130000
DTEND;TZID=UTC:20230819T140000
DTSTAMP:20260403T212604
CREATED:20230120T151835Z
LAST-MODIFIED:20230627T140846Z
UID:95893-1692450000-1692453600@www.pfic.org
SUMMARY:Parent and Caregiver Support Group
DESCRIPTION:What the support group is about – The group offers a safe and welcoming space in which parents and caregivers of PFIC patients can connect with one another\, share their experiences\, and offer one another support. \nWhy it’s important – Parenting a child with a rare disease can be exhausting\, overwhelming\, and isolating. It’s important to have a space in which you feel seen\, heard\, and valued. Our goal is to make this support group into just such a space\, so that participants leave feeling connected\, understood\, and recharged. \nAll parents and caregivers are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZcld-CuqzopHtSDCaTTyKm_AysjRq2SX7N7
URL:https://www.pfic.org/event/parent-and-caregiver-support-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230819T150000
DTEND;TZID=UTC:20230819T160000
DTSTAMP:20260403T212604
CREATED:20230120T152627Z
LAST-MODIFIED:20230627T140736Z
UID:95899-1692457200-1692460800@www.pfic.org
SUMMARY:Patient Support Group
DESCRIPTION:What the support group is about – The group offers a safe and welcoming space in which adult PFIC patients can connect with one another\, share their experiences\, and offer one another support. \nWhy it’s important – Having a rare disease can be exhausting\, overwhelming\, and isolating. It’s important to have a space in which you feel seen\, heard\, and valued. Our goal is to make this support group into just such a space\, so that participants leave feeling connected\, understood\, and recharged. \nAll patients are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZ0vd-ugpjwoEt04tryr5hDNPzha3vwiYp_m
URL:https://www.pfic.org/event/patient-support-group-3/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230923T130000
DTEND;TZID=UTC:20230923T140000
DTSTAMP:20260403T212604
CREATED:20221230T182105Z
LAST-MODIFIED:20230627T140957Z
UID:95729-1695474000-1695477600@www.pfic.org
SUMMARY:Parent & Caregiver Support Group
DESCRIPTION:What the support group is about – The group offers a safe and welcoming space in which parents and caregivers of PFIC patients can connect with one another\, share their experiences\, and offer one another support. \nWhy it’s important – Parenting a child with a rare disease can be exhausting\, overwhelming\, and isolating. It’s important to have a space in which you feel seen\, heard\, and valued. Our goal is to make this support group into just such a space\, so that participants leave feeling connected\, understood\, and recharged. \nAll parents and caregivers are invited to join. Register for the session here: https://us06web.zoom.us/meeting/register/tZYrdeGgpj0rGdB7pvklTP2fnWnO8GjxpeRi
URL:https://www.pfic.org/event/parent-caregiver-support-group-3/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231005
DTEND;VALUE=DATE:20231006
DTSTAMP:20260403T212604
CREATED:20200909T202430Z
LAST-MODIFIED:20230627T141100Z
UID:88725-1696464000-1696550399@www.pfic.org
SUMMARY:PFIC Awareness Day
DESCRIPTION:The fifth annual PFIC Awareness Day is October 5\, 2023. The PFIC community around the world will hold advocacy and awareness events to honor patients\, families\, and caregivers. Awareness Day is used to spread information about our rare disease to help our supporter community grow\, and help us find more patients who need help and support.
URL:https://www.pfic.org/event/pfic-awareness-day/
CATEGORIES:Advocacy Events
ORGANIZER;CN="PFIC Network%2C Inc.":MAILTO:emily@pfic.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231018T190000
DTEND;TZID=UTC:20231018T200000
DTSTAMP:20260403T212604
CREATED:20231011T174408Z
LAST-MODIFIED:20231011T174408Z
UID:97952-1697655600-1697659200@www.pfic.org
SUMMARY:PFIC Parents & Caregivers Virtual Support Group
DESCRIPTION:  \n \nVirtual PFIC Support Groups provide a safe and welcoming space in which patients\, family members and caregivers of PFIC patients can connect with one another\, share their experiences\, and offer one another support. All patients\, caregivers\, and family members are invited to join. \nRegister Now!
URL:https://www.pfic.org/event/pfic-parents-caregivers-virtual-support-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231115T190000
DTEND;TZID=UTC:20231115T200000
DTSTAMP:20260403T212604
CREATED:20231011T175419Z
LAST-MODIFIED:20231011T175525Z
UID:97957-1700074800-1700078400@www.pfic.org
SUMMARY:PFIC Parents & Caregivers Virtual Support Group
DESCRIPTION:  \n \nVirtual PFIC Support Groups provide a safe and welcoming space in which patients\, family members and caregivers of PFIC patients can connect with one another\, share their experiences\, and offer one another support. All patients\, caregivers\, and family members are invited to join. \nRegister Now!
URL:https://www.pfic.org/event/97957/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231204
DTEND;VALUE=DATE:20231205
DTSTAMP:20260403T212604
CREATED:20231129T160533Z
LAST-MODIFIED:20231129T164236Z
UID:98116-1701648000-1701734399@www.pfic.org
SUMMARY:IMPACT Module 2 Launch Day
DESCRIPTION:Module 2 of Project IMPACT is now live! Complete it today! \nIf you are a PFIC patient (ages 14+)\, parent\, healthcare provider\, or researcher\, we want YOU to participate!  \nIMPACT modules are designed to help PFIC families AND clinicians & researchers learn more about patient-centered coutcomes research (PCOR). Having a shared base of PCOR knowledge helps us all be prepared to have important conversations about what PCOR studies could look like in PFIC. \nThere will be a total of 6 modules throughout Project IMPACT. Each one consists of a learning module and a feedback survey and takes about 25 min to complete. Module 1 is also still available if you haven’t completed it yet.
URL:https://www.pfic.org/event/impact-module-2-launch-day/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231220T180000
DTEND;TZID=America/New_York:20231220T193000
DTSTAMP:20260403T212604
CREATED:20231011T173633Z
LAST-MODIFIED:20231201T175802Z
UID:97948-1703095200-1703100600@www.pfic.org
SUMMARY:Project IMPACT Focus Group Meeting
DESCRIPTION:  \n \nAre you a PFIC patient\, caregiver\, researcher or clinician? Have you completed the Project IMPACT Module 2 learning activity? If so\, we hope you can join us for a virtual focus group to discuss the topic of Module 2\, “How can I contribute to patient centered outcomes research?”. Completing Module 2 prior to the focus group helps ensure that we have a shared based of knowledge to help stimulate meaningful conversations. \nThe learning modules and focus groups are important parts of Project IMPACT\, our ongoing patient-centered outcomes research education project. This project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455). \n  \nRegister for the focus group now!
URL:https://www.pfic.org/event/project-impact-focus-group-meeting/
END:VEVENT
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