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DTSTART;VALUE=DATE:20220409
DTEND;VALUE=DATE:20220410
DTSTAMP:20260403T183048
CREATED:20220401T181721Z
LAST-MODIFIED:20220401T181721Z
UID:93950-1649462400-1649548799@www.pfic.org
SUMMARY:International Alliance Meetings
DESCRIPTION:Formerly known as the Global Advisory Council.  \nWe invite you to join us at the International Alliance meeting. \nThis is a space for addressing PFIC resource needs as well as advocacy and policy issues in participating countries. Because of time zone differences across the globe we will be having two different meetings for people to attend. Th first is at 6 AM EST(USA) and the second will be at 3 PM EST(USA) on the same day.  \nRegister for the meetings here:\n6 AM EST(USA) Meeting: https://us06web.zoom.us/meeting/register/tZUucumqrT8oGtOE8em4ezBYAA2ljChS2MXE \n3 PM EST(USA) Meeting: https://us06web.zoom.us/meeting/register/tZcrd-6grjwuE9WIyGs3Six6u-wv2Vb-O-Kv
URL:https://www.pfic.org/event/international-alliance-meetings/2022-04-09/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220429
DTEND;VALUE=DATE:20220501
DTSTAMP:20260403T183048
CREATED:20211202T162804Z
LAST-MODIFIED:20211207T152651Z
UID:92777-1651190400-1651363199@www.pfic.org
SUMMARY:2022 Scientific Conference
DESCRIPTION:The PFIC Network will be hosting a scientific meeting for researchers\, patients\, providers and industry partners on April 29-30 in Pittsburg\, Pennsylvania. This will be a hybrid meeting with opportunities to present research both in person and virtual.  \nImportant Dates:  \nAbstract submission deadline: January 21\, 2020\nFinal decision on presentations: January 28\, 2020 \nSubmit abstract: Click Here \nSee event home: Click Here \nSee the venue: Click Here
URL:https://www.pfic.org/event/2022-scientific-conference/
LOCATION:Pittsburgh\, PA\, 1111 Airport Boulevard\, Pittsburgh\, Pennsylvania\, United States\, 15231\, Pittsburgh\, PA\, 15231\, United States
CATEGORIES:Conferences,Educational Webinar Series
ORGANIZER;CN="PFIC Network%2C Inc.":MAILTO:emily@pfic.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220628T160000
DTEND;TZID=UTC:20220628T170000
DTSTAMP:20260403T183048
CREATED:20220621T134945Z
LAST-MODIFIED:20220621T134945Z
UID:94329-1656432000-1656435600@www.pfic.org
SUMMARY:Kids Club Community Call (Moved from the 21st)
DESCRIPTION:Join a community call for the kids! This is a time for PFIC kids to get together and talk about anything and everything\, play games\, and have fun in the PFIC Community.
URL:https://www.pfic.org/event/kids-club-community-call-moved-from-the-21st/
CATEGORIES:Community Calls
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Karachi:20220903T130000
DTEND;TZID=Asia/Karachi:20220903T140000
DTSTAMP:20260403T183048
CREATED:20220905T181143Z
LAST-MODIFIED:20220914T144821Z
UID:94751-1662210000-1662213600@www.pfic.org
SUMMARY:Project REACH – Pakistan
DESCRIPTION:Project REACH (Research\, Education\, Advocacy\, Collaboration\, and Hope)\, an initiative born out of the International Alliance and supported by our Health Equity grant award from Global Genes. \nThis project consists of a three-part workshop series leveraging interpretation services\, dedicated to PFIC disease and advocacy education tailored to each participating country. Through the month of September\, we will be executing the first two REACH workshop series – a series for patients in India\, and a separate series for Pakistan. \nAre you a patient\, caregiver\, or healthcare provider in these countries? Join us on Zoom!!! Interpreters for Hindi and Urdu will be available. Contact melissa@pfic.org to sign-up.
URL:https://www.pfic.org/event/project-reach-pakistan/2022-09-03/
CATEGORIES:Advocacy Series
ATTACH;FMTTYPE=image/jpeg:https://www.pfic.org/wp-content/uploads/PFIC-REACH-Flyer-Pakistan_ur-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20220904T103000
DTEND;TZID=Asia/Kolkata:20220904T113000
DTSTAMP:20260403T183048
CREATED:20220905T181555Z
LAST-MODIFIED:20220914T144913Z
UID:94757-1662287400-1662291000@www.pfic.org
SUMMARY:Project REACH – India
DESCRIPTION:Project REACH (Research\, Education\, Advocacy\, Collaboration\, and Hope)\, an initiative born out of the International Alliance and supported by our Health Equity grant award from Global Genes. \nThis project consists of a three-part workshop series leveraging interpretation services\, dedicated to PFIC disease and advocacy education tailored to each participating country. Through the month of September\, we will be executing the first two REACH workshop series – a series for patients in India\, and a separate series for Pakistan. \nAre you a patient\, caregiver\, or healthcare provider in these countries? Join us on Zoom!!! Interpreters for Hindi and Urdu will be available. Contact melissa@pfic.org to sign-up.
URL:https://www.pfic.org/event/project-reach-india/2022-09-04/
CATEGORIES:Advocacy Series
ATTACH;FMTTYPE=image/jpeg:https://www.pfic.org/wp-content/uploads/PFIC-REACH-Flyer-India_hi-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220917T150000
DTEND;TZID=UTC:20220917T160000
DTSTAMP:20260403T183048
CREATED:20220906T171741Z
LAST-MODIFIED:20220914T145118Z
UID:94763-1663426800-1663430400@www.pfic.org
SUMMARY:Mental Health Support Session
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 patients\, caregivers\, and family members are invited to join. Register for the session here: https://bit.ly/3eCb2LP \nHosted by Lisa Jensen. Lisa’s Bio: \nHow are you connected to PFIC?\nMy friend’s daughter has PFIC.\nWhat is your role in the network?\nI facilitate an online support group for families and individuals affected by PFIC.\nWhere are you located?\nOn a farm just outside of Lexington\, KY.\nWhat do you hope to accomplish?\nI hope to help build an active and thriving support group—one in which all members feel safe\, heard\, understood\, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy\, wisdom\, knowledge\, and experience within the PFIC community\, though. My hope is to create a space in which members can turn toward one another\, draw upon these strengths\, and heal together.\nWhat skills do you bring to the network?\nI care about people\, have a passion for mental health\, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology\, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers\, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.\nWhat would you sing at karaoke night?\nProbably “Landslide\,” since I can actually hit the high notes—at least on a good day!
URL:https://www.pfic.org/event/mental-health-support-session/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221001T150000
DTEND;TZID=UTC:20221001T160000
DTSTAMP:20260403T183048
CREATED:20220928T134939Z
LAST-MODIFIED:20220928T134939Z
UID:94923-1664636400-1664640000@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/tZ0kdOCorzwsEtDBBI74LBL-HcXP8WiaP3_V
URL:https://www.pfic.org/event/grandparents-non-caregiver-support-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221015T120000
DTEND;TZID=UTC:20221015T130000
DTSTAMP:20260403T183048
CREATED:20220928T135340Z
LAST-MODIFIED:20221005T144617Z
UID:94927-1665835200-1665838800@www.pfic.org
SUMMARY:Patient Support Group Session
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/tZMkcOygrzkuHNzfIXb6Yg7d-XmIEQhOwQzS \nHosted by Lisa Jensen. Lisa’s Bio: \nHow are you connected to PFIC?\nMy friend’s daughter has PFIC.\nWhat is your role in the network?\nI facilitate an online support group for families and individuals affected by PFIC.\nWhere are you located?\nOn a farm just outside of Lexington\, KY.\nWhat do you hope to accomplish?\nI hope to help build an active and thriving support group—one in which all members feel safe\, heard\, understood\, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy\, wisdom\, knowledge\, and experience within the PFIC community\, though. My hope is to create a space in which members can turn toward one another\, draw upon these strengths\, and heal together.\nWhat skills do you bring to the network?\nI care about people\, have a passion for mental health\, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology\, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers\, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.\nWhat would you sing at karaoke night?\nProbably “Landslide\,” since I can actually hit the high notes—at least on a good day!
URL:https://www.pfic.org/event/mental-health-support-group-session/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221015T133000
DTEND;TZID=UTC:20221015T143000
DTSTAMP:20260403T183048
CREATED:20220928T135501Z
LAST-MODIFIED:20221005T144711Z
UID:94929-1665840600-1665844200@www.pfic.org
SUMMARY:Parent & Caregiver Support Group Session
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/tZMvc-yorDopGNRLcDbJjV3ED3EB2qLYE-fg \nHosted by Lisa Jensen. Lisa’s Bio: \nHow are you connected to PFIC?\nMy friend’s daughter has PFIC.\nWhat is your role in the network?\nI facilitate an online support group for families and individuals affected by PFIC.\nWhere are you located?\nOn a farm just outside of Lexington\, KY.\nWhat do you hope to accomplish?\nI hope to help build an active and thriving support group—one in which all members feel safe\, heard\, understood\, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy\, wisdom\, knowledge\, and experience within the PFIC community\, though. My hope is to create a space in which members can turn toward one another\, draw upon these strengths\, and heal together.\nWhat skills do you bring to the network?\nI care about people\, have a passion for mental health\, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology\, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers\, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.\nWhat would you sing at karaoke night?\nProbably “Landslide\,” since I can actually hit the high notes—at least on a good day!
URL:https://www.pfic.org/event/mental-health-support-group-session-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221029T150000
DTEND;TZID=UTC:20221029T160000
DTSTAMP:20260403T183048
CREATED:20221005T145143Z
LAST-MODIFIED:20221005T145143Z
UID:95070-1667055600-1667059200@www.pfic.org
SUMMARY:Patient Support Group Session
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/tZEpdeCgrTMoHNVh4DOIxjSS4GvM9S0bOkfI \nHosted by Lisa Jensen. Lisa’s Bio: \nHow are you connected to PFIC?\nMy friend’s daughter has PFIC.\nWhat is your role in the network?\nI facilitate an online support group for families and individuals affected by PFIC.\nWhere are you located?\nOn a farm just outside of Lexington\, KY.\nWhat do you hope to accomplish?\nI hope to help build an active and thriving support group—one in which all members feel safe\, heard\, understood\, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy\, wisdom\, knowledge\, and experience within the PFIC community\, though. My hope is to create a space in which members can turn toward one another\, draw upon these strengths\, and heal together.\nWhat skills do you bring to the network?\nI care about people\, have a passion for mental health\, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology\, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers\, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.\nWhat would you sing at karaoke night?\nProbably “Landslide\,” since I can actually hit the high notes—at least on a good day!
URL:https://www.pfic.org/event/patient-support-group-session/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221112T120000
DTEND;TZID=UTC:20221112T130000
DTSTAMP:20260403T183048
CREATED:20221005T145248Z
LAST-MODIFIED:20221005T145248Z
UID:95072-1668254400-1668258000@www.pfic.org
SUMMARY:Patient Support Group Session
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/tZwsfu-rqTMpGt12zV6huDRpM1XyeZXVNuKa \nHosted by Lisa Jensen. Lisa’s Bio: \nHow are you connected to PFIC?\nMy friend’s daughter has PFIC.\nWhat is your role in the network?\nI facilitate an online support group for families and individuals affected by PFIC.\nWhere are you located?\nOn a farm just outside of Lexington\, KY.\nWhat do you hope to accomplish?\nI hope to help build an active and thriving support group—one in which all members feel safe\, heard\, understood\, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy\, wisdom\, knowledge\, and experience within the PFIC community\, though. My hope is to create a space in which members can turn toward one another\, draw upon these strengths\, and heal together.\nWhat skills do you bring to the network?\nI care about people\, have a passion for mental health\, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology\, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers\, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.\nWhat would you sing at karaoke night?\nProbably “Landslide\,” since I can actually hit the high notes—at least on a good day!
URL:https://www.pfic.org/event/patient-support-group-session-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221112T133000
DTEND;TZID=UTC:20221112T143000
DTSTAMP:20260403T183048
CREATED:20221005T145026Z
LAST-MODIFIED:20221005T145026Z
UID:95068-1668259800-1668263400@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/tZYof-qppzojG9Yx8Jz7rQmgcWGwjZY6KA9A  \nHosted by Lisa Jensen. Lisa’s Bio: \nHow are you connected to PFIC?\nMy friend’s daughter has PFIC.\nWhat is your role in the network?\nI facilitate an online support group for families and individuals affected by PFIC.\nWhere are you located?\nOn a farm just outside of Lexington\, KY.\nWhat do you hope to accomplish?\nI hope to help build an active and thriving support group—one in which all members feel safe\, heard\, understood\, and valued. Living with a rare disease or loving someone with a rare disease can be overwhelming and isolating. There is so much empathy\, wisdom\, knowledge\, and experience within the PFIC community\, though. My hope is to create a space in which members can turn toward one another\, draw upon these strengths\, and heal together.\nWhat skills do you bring to the network?\nI care about people\, have a passion for mental health\, and value meaningful connection. In addition to having a Masters Degree in Counseling Psychology\, I have firsthand experience in living with a debilitating chronic illness. I created an online community for my fellow Covid-19 long-haulers\, where I have both witnessed and felt the healing that comes from being part of a group that deeply understands what you are going through.\nWhat would you sing at karaoke night?\nProbably “Landslide\,” since I can actually hit the high notes—at least on a good day!
URL:https://www.pfic.org/event/parent-caregiver-support-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221112T150000
DTEND;TZID=UTC:20221112T160000
DTSTAMP:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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:20260403T183048
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240220T180000
DTEND;TZID=America/New_York:20240220T193000
DTSTAMP:20260403T183048
CREATED:20240131T170411Z
LAST-MODIFIED:20240131T170411Z
UID:98224-1708452000-1708457400@www.pfic.org
SUMMARY:Project IMPACT Focus Group Meeting
DESCRIPTION:Register for the February Focus Group now!\nThis is the last focus group meeting before we come together at the 2024 PFIC Family & Scientific Conference in April! During the meeting\, we will get a serious sneak peak of our new PFIC treatment information web platform\, and provide one more chance for everyone to share their feedback before it goes into its final development phase. \nWe will also do an exciting exercise together to prepare for an IMPACT activity at the Conference. Our plan of action: begin creating a list of community-identified priorities to focus on in future PFIC research.  \nYou do not need to have attended a previous focus group to join this one! Project IMPACT is our ongoing patient-centered outcomes research education project. Check out the IMPACT project webpage for more info on the project. Interested in getting involved and getting up to speed? Click the “Participate” button on the webpage to take Modules 1 & 2 today! \nThis project is funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).
URL:https://www.pfic.org/event/project-impact-focus-group-february/
ATTACH;FMTTYPE=image/jpeg:https://www.pfic.org/wp-content/uploads/dec-focus-2-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240426
DTEND;VALUE=DATE:20240428
DTSTAMP:20260403T183048
CREATED:20231129T163358Z
LAST-MODIFIED:20231129T163358Z
UID:98122-1714089600-1714262399@www.pfic.org
SUMMARY:2024 PFIC Family & Scientific Conference
DESCRIPTION:The PFIC Family & Scientific Conference is back! This unique conference brings together PFIC patients\, families\, clinicians\, researchers\, and industry stakeholders for an unforgettable experience of learning\, sharing\, and networking. \n  \n  \nWe are partnering with Cincinnati Children’s Hospital and Medical Center to host the 2024 conference in Cincinnati\, Ohio. The Undiagnosed and Rare Liver Disease Center at CCHMC is focused on improving outcomes and finding a cure for PFIC and related diseases. We are excited to work together to make this conference a special one! \nWe hope you can join us!
URL:https://www.pfic.org/event/2024-pfic-family-scientific-conference/
LOCATION:Cincinnati\, Ohio\, Cincinnati\, Ohio\, USA
END:VEVENT
END:VCALENDAR