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BEGIN:VEVENT
DTSTART;TZID=UTC:20231018T190000
DTEND;TZID=UTC:20231018T200000
DTSTAMP:20260403T220805
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:20260403T220805
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:20260403T220805
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:20260403T220805
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:20260403T220805
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:20260403T220805
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240620T180000
DTEND;TZID=America/New_York:20240620T193000
DTSTAMP:20260403T220805
CREATED:20240529T163218Z
LAST-MODIFIED:20240610T084450Z
UID:98572-1718906400-1718911800@www.pfic.org
SUMMARY:Project IMPACT June Focus Group Meeting
DESCRIPTION:Register for the June Focus Group now!\n Join our community of patients\, parents\, clinicians\, and researchers on June 20th on Zoom for a conversation about research!  \nWhy?    \nWe will be brainstorming how a specific type of research called Comparative Effectiveness Research (CER) could help address important questions like\, “Which treatment is the best choice for me/my child?”. CER could also create more consistent approaches in how doctors care for PFIC\, reducing the variability in treatment plans that patients experience across different centers. \nWe’d love to have you and to hear your valuable perspective. Join us from your desk\, couch\, park\, or wherever you are. We look forward to seeing you there! ❤️  \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\, & 3 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-june-focus-group-meeting/
ATTACH;FMTTYPE=image/jpeg:https://www.pfic.org/wp-content/uploads/Y1-IMPACT-SOCIALS-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240708T060000
DTEND;TZID=America/New_York:20240708T070000
DTSTAMP:20260403T220805
CREATED:20240614T074015Z
LAST-MODIFIED:20240614T074711Z
UID:98594-1720418400-1720422000@www.pfic.org
SUMMARY:International Alliance Meeting #1 (July 2024)
DESCRIPTION:Join us July 8th for a meeting of the PFIC Network International Alliance! \nThe International Alliance seeks to provide an international identity for PFIC organizations and the global PFIC community as a whole. It is a space dedicated to addressing resource needs\, as well as advocacy and policy issues specific to each participating country. \nAll PFIC patients\, family members and advocates are welcome! \nAt this meeting\, we will give updates on current global advocacy efforts and discuss plans for this year’s PFIC Awareness Day in October. \nWe hope you can join us! \nTo accommodate more time zones\, we are offering two meeting times: 6:00 AM and 3:00 PM EST. \nRegister for the 6 AM EST meeting \nRegister for the 3 PM EST meeting \n 
URL:https://www.pfic.org/event/international-alliance-meeting-1-july-2024/
ATTACH;FMTTYPE=image/jpeg:https://www.pfic.org/wp-content/uploads/International-Alliance-Collaboration-logo-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240708T150000
DTEND;TZID=America/New_York:20240708T160000
DTSTAMP:20260403T220805
CREATED:20240614T074340Z
LAST-MODIFIED:20240614T074600Z
UID:98599-1720450800-1720454400@www.pfic.org
SUMMARY:International Alliance Meeting #2 (July 2024)
DESCRIPTION:  \nJoin us July 8th for a meeting of the PFIC Network International Alliance! \nThe International Alliance seeks to provide an international identity for PFIC organizations and the global PFIC community as a whole. It is a space dedicated to addressing resource needs\, as well as advocacy and policy issues specific to each participating country. \nAll PFIC patients\, family members and advocates are welcome! \n  \nAt this meeting\, we will give updates on current global advocacy efforts and discuss plans for this year’s PFIC Awareness Day in October. \nWe hope you can join us! \nTo accommodate more time zones\, we are offering two meeting times: 6:00 AM and 3:00 PM EST. \nRegister for the 6 AM EST meeting \nRegister for the 3 PM EST meeting \n 
URL:https://www.pfic.org/event/international-alliance-meeting-2-july-2024/
ATTACH;FMTTYPE=image/jpeg:https://www.pfic.org/wp-content/uploads/International-Alliance-Collaboration-logo-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240711T180000
DTEND;TZID=UTC:20240711T190000
DTSTAMP:20260403T220805
CREATED:20240620T152745Z
LAST-MODIFIED:20240620T153620Z
UID:98650-1720720800-1720724400@www.pfic.org
SUMMARY:Northeast Ohio Liver Alliance Roundtable Webinar
DESCRIPTION:Our Executive Director\, Emily Ventura\, will be a panelist at an upcoming free webinar focusing on PFIC and Wilson’s Disease hosted by the Northeast Ohio Liver Alliance. Webinar participants will have the chance to learn from two of the nation’s foremost expert physicians in these two highly rare liver diseases. Hear a conversation between providers and panelists about patient-centered care! \nRegister Today! \n 
URL:https://www.pfic.org/event/northest-ohio-liver-alliance-roundtable-webinar/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240820T180000
DTEND;TZID=America/New_York:20240820T193000
DTSTAMP:20260403T220805
CREATED:20240723T180631Z
LAST-MODIFIED:20240723T180631Z
UID:109576-1724176800-1724182200@www.pfic.org
SUMMARY:Project IMPACT August Focus Group Meeting
DESCRIPTION:Register for the August Focus Group now!\n Join our community of patients\, parents\, clinicians\, and researchers on August 20th on Zoom for a conversation about research!  \nWhy?    \nWe will be brainstorming how a specific type of research called Comparative Effectiveness Research (CER) could help address important questions like\, “Which treatment is the best choice for me/my child?”. CER could also create more consistent approaches in how doctors care for PFIC\, reducing the variability in treatment plans that patients experience across different centers. \nWe’d love to have you and to hear your valuable perspective. Join us from your desk\, couch\, park\, or wherever you are. We look forward to seeing you there! ❤️  \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\, & 3 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-august-focus-group-meeting-2/
ATTACH;FMTTYPE=image/jpeg:https://www.pfic.org/wp-content/uploads/Y1-IMPACT-SOCIALS-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240902
DTEND;VALUE=DATE:20240903
DTSTAMP:20260403T220805
CREATED:20240708T125914Z
LAST-MODIFIED:20240729T190407Z
UID:109545-1725235200-1725321599@www.pfic.org
SUMMARY:2024 PFIC Labor Day Party and Disc Golf Tournament
DESCRIPTION:Join us Monday\, September 2nd (Labor Day) for the official kickoff event of our PFIC Awareness Day fundraising campaign! \nThis family-friendly event will have disc golf\, corn hole and more! \nHosted by Redpoint BBQ in Campton\, KY in the beautiful Red River Gorge area. \nCheck out our event website for more info!
URL:https://www.pfic.org/event/2024-pfic-charity-open-disc-golf-tournament/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241001T000000
DTEND;TZID=UTC:20241031T233000
DTSTAMP:20260403T220805
CREATED:20241016T194834Z
LAST-MODIFIED:20241016T194834Z
UID:109827-1727740800-1730417400@www.pfic.org
SUMMARY:PFIC Awareness Month
DESCRIPTION:PFIC Awareness Day is October 5th\, but we know this disease deserves more than a day. So here at PFIC Network\, the entire month of October will be PFIC Awareness Month. All month long we will be raising awareness about PFIC and raising funds for PFIC research and the support services you have come to love.
URL:https://www.pfic.org/event/pfic-awareness-month/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241005
DTEND;VALUE=DATE:20241006
DTSTAMP:20260403T220805
CREATED:20240523T020806Z
LAST-MODIFIED:20240708T131335Z
UID:98559-1728086400-1728172799@www.pfic.org
SUMMARY:2024 PFIC Awareness Day
DESCRIPTION:Every year on October 5th\, we recognize\, share\, and support the PFIC community in hopes for a better future for those we love. \nVisit our PFIC Awareness Day page to learn more about how you can get involved!
URL:https://www.pfic.org/event/2024-pfic-awareness-day/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241009T190000
DTEND;TZID=UTC:20241009T200000
DTSTAMP:20260403T220805
CREATED:20240905T190651Z
LAST-MODIFIED:20240905T202053Z
UID:109650-1728500400-1728504000@www.pfic.org
SUMMARY:Kids Club- Official Relaunch Zoom Call
DESCRIPTION:We are so excited to announce the official launch of the PFIC Network’s Kids Club\, a gathering space for teens and tweens living with PFIC. \n \nWhat is Kids Club? \nKids Club is a virtual gathering of teens and tweens that will take place via WhatsApp and Zoom. WhatsApp is a free messaging app that allows participants to share text-based messages\, pictures\, and emojis within a group. The Kids Club WhatsApp group will be a closed group\, meaning that participants must be added by a group admin. This helps protect kids from spammers\, scammers\, and other unsavory types. If you would like to take further steps to protect your child’s privacy on WhatsApp\, you can learn about parental controls here. Lisa Crompton (PFIC Network Program Associate\, as well as a PFIC parent) and Lisa Jensen (Support Group Facilitator) will be group admins\, along with teen volunteer extraordinaire\, Cadence Crompton. There are no hard and fast age rules for WhatsApp\, so if you feel that your child is mature enough to benefit from participating in casual group conversations with other kids with PFIC\, then we hope to see them there!  \nBeginning in October\, Kids Club will also host monthly Zoom calls for teens and older tweens (suggested age 11+). Lisa Jensen will facilitate these calls\, with the aim of handing more and more leadership and autonomy to the kids over time. Calls will include games\, icebreakers\, casual conversation\, and–depending on the interests of participants–opportunities for advocacy and outreach. The first call is scheduled for Wednesday\, October 9\, 7:00-8:00 PM EDT. \nRegister Today!
URL:https://www.pfic.org/event/kids-club-official-relaunch-zoom-call/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241022T180000
DTEND;TZID=UTC:20241022T193000
DTSTAMP:20260403T220805
CREATED:20240919T185829Z
LAST-MODIFIED:20240919T185829Z
UID:109690-1729620000-1729625400@www.pfic.org
SUMMARY:PFIC IMPACT October Focus Group Meeting
DESCRIPTION:Join us for our next Focus Group in October!\n\n\nJoin our community of patients\, parents\, clinicians\, and researchers on Tuesday\, October 22nd at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT\, please visit our project website. \nRegister Now!
URL:https://www.pfic.org/event/pfic-impact-october-focus-group-meeting/
CATEGORIES:Advocacy Events,Community Calls
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241102T190000
DTEND;TZID=UTC:20241102T200000
DTSTAMP:20260403T220805
CREATED:20241016T194035Z
LAST-MODIFIED:20241016T194035Z
UID:109825-1730574000-1730577600@www.pfic.org
SUMMARY:PFIC Kids Club Meeting-November 2024
DESCRIPTION:Are you a teen or tween with PFIC or BRIC? Join us on November 2nd for our next Kids Club call! \nRegister today! \nWhat is Kids Club? \nKids Club is a virtual gathering of teens and tweens that will take place via WhatsApp and Zoom. WhatsApp is a free messaging app that allows participants to share text-based messages\, pictures\, and emojis within a group. The Kids Club WhatsApp group will be a closed group\, meaning that participants must be added by a group admin. This helps protect kids from spammers\, scammers\, and other unsavory types. If you would like to take further steps to protect your child’s privacy on WhatsApp\, you can learn about parental controls here. Lisa Crompton (PFIC Network Program Associate\, as well as a PFIC parent) and Lisa Jensen (Support Group Facilitator) will be group admins\, along with teen volunteer extraordinaire\, Cadence Crompton. There are no hard and fast age rules for WhatsApp\, so if you feel that your child is mature enough to benefit from participating in casual group conversations with other kids with PFIC\, then we hope to see them there! \nBeginning in October\, Kids Club will also host monthly Zoom calls for teens and older tweens (suggested age 11+). Lisa Jensen will facilitate these calls\, with the aim of handing more and more leadership and autonomy to the kids over time. Calls will include games\, icebreakers\, casual conversation\, and–depending on the interests of participants–opportunities for advocacy and outreach. \nIf you have questions\, or would like to be added to the Whatsapp group\, please contact us!
URL:https://www.pfic.org/event/pfic-kids-club-meeting-november-2024/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241218T180000
DTEND;TZID=UTC:20241218T193000
DTSTAMP:20260403T220805
CREATED:20241113T030954Z
LAST-MODIFIED:20241113T030954Z
UID:109881-1734544800-1734550200@www.pfic.org
SUMMARY:December IMPACT Focus Group
DESCRIPTION:Join us for our next Focus Group in December!\n\n\nJoin our community of patients\, parents\, clinicians\, and researchers on Wednesday\, December 18th at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT\, please visit our project website. \nRegister Now!
URL:https://www.pfic.org/event/december-impact-focus-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250220T180000
DTEND;TZID=UTC:20250220T193000
DTSTAMP:20260403T220805
CREATED:20250115T162407Z
LAST-MODIFIED:20250115T162407Z
UID:109931-1740074400-1740079800@www.pfic.org
SUMMARY:February IMPACT Focus Group
DESCRIPTION:Join us for our next Focus Group in February!\n\n\nJoin our community of patients\, parents\, clinicians\, and researchers on Thursday\, February 20th at 6pm EST on Zoom for a conversation about PFIC research priorities! You do not need to have attended a previous IMPACT Focus Group to join us. For more information about Project IMPACT\, please visit our project website. \nRegister Now!
URL:https://www.pfic.org/event/february-impact-focus-group-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250228T000000
DTEND;TZID=UTC:20250228T233000
DTSTAMP:20260403T220805
CREATED:20250109T172913Z
LAST-MODIFIED:20250109T172913Z
UID:109925-1740700800-1740785400@www.pfic.org
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day is the global movement for rare diseases\, working towards equity in social opportunity\, healthcare\, and access to diagnosis and therapies for people living with a rare disease. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. It was created in 2008 by EURORDIS and over 60 national alliance patient organisation partners.
URL:https://www.pfic.org/event/rare-disease-day-2/
END:VEVENT
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