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X-WR-CALDESC:Events for PFIC
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DTSTART;VALUE=DATE:20210623
DTEND;VALUE=DATE:20210627
DTSTAMP:20260404T211551
CREATED:20210318T151856Z
LAST-MODIFIED:20210318T172354Z
UID:91112-1624406400-1624751999@www.pfic.org
SUMMARY:EASL International Liver Congress 2021
DESCRIPTION:We will be attending the virtual event offered by EASL. Patients and affiliates are encouraged to join to learn more! Details taken from website: \n\n\nThe International Liver Congress™ 2021\, our flagship congress\, is delivered to you on our online learning platform\, EASL Campus. ILC 2021 is all about beating liver disease together. We will tackle this challenge from multiple perspectives\, drawing on multidisciplinary expertise. ILC 2021 will be your live EASL Campus experience\, enabling you to broaden your knowledge and build bridges\, between people and areas of expertise. Getting onto EASL Campus offers you the perfect mix of mingling and learning. \nWe are pleased to announce new dates: ILC 2021 will take place from Wednesday to Saturday\, 23–26 June.   \nCalling upon our international\, multi-generational network and employing a range of learning methods\, we will draw inspiration from the evolution of science. Together.
URL:https://www.pfic.org/event/easl-international-liver-congress-2021/
CATEGORIES:Conferences
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20210716
DTEND;VALUE=DATE:20210718
DTSTAMP:20260404T211551
CREATED:20210318T121814Z
LAST-MODIFIED:20210318T121814Z
UID:91099-1626393600-1626566399@www.pfic.org
SUMMARY:Virtual Family Conference
DESCRIPTION:Thanks to the ALGSA and MyCityMed\, PFIC will be co-hosting a 2021 virtual family conference. There will be ways to learn more about PFIC and what’s new in the research of PFIC\, opportunities to learn more about how you can advocate PFIC\, and ways to interact with other patients\, families\, doctors\, scientists and industry professionals. We hope you will join us! \nRegistration will be coming soon!
URL:https://www.pfic.org/event/virtual-family-conference/
CATEGORIES:Conferences
ORGANIZER;CN="PFIC Network%2C Inc.":MAILTO:emily@pfic.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210913T160000
DTEND;TZID=UTC:20210913T170000
DTSTAMP:20260404T211551
CREATED:20210907T122813Z
LAST-MODIFIED:20210907T122954Z
UID:92247-1631548800-1631552400@www.pfic.org
SUMMARY:Kids Club-Zoom Chat
DESCRIPTION:This zoom chat is very special. It is a chat room hosted by kids with PFIC\, for kids with PFIC. The hosts\, Cade (17)\, Cadence (11) and Cedar (9)\, have all been through/are going through PFIC and understand what it is like to be a kid who is itchy\, who has had multiple hospitalizations\, who has had a liver transplant\, who has to take many medications\, or whose parents just keep talking about PFIC. \nThese kids are very special. Starting on September 13 @ 4 pm EST (USA)\, they are going to meet via zoom. They enjoy getting together on zoom to do art together\, have show and tell\, talk about their favorite activities\, or just hang out. They are also open to talking with other kids about having PFIC. \nKids of all ages\, from all areas of the world are welcome. PFIC Network can help with language support\, time zone conversion\, or tech facilitation if needed\, so please contact lisa@pfic.org if you or your child would like to join but may need additional assistance
URL:https://www.pfic.org/event/kids-club-zoom-chat/
CATEGORIES:Community Calls
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210928
DTEND;VALUE=DATE:20210930
DTSTAMP:20260404T211551
CREATED:20210318T160237Z
LAST-MODIFIED:20210318T160237Z
UID:91123-1632787200-1632959999@www.pfic.org
SUMMARY:Global Genes Rare Patient Advocacy Summit
DESCRIPTION:The PFIC Network will be registering for and attending the Global Genes Rare Patient Advocacy Summit. Patients\, ambassadors and advocates are encourage to reach out to learn more and join us! Information taken from website: \nEach year Global Genes convenes one of the world’s largest gatherings of rare disease patients\, caregivers\, advocates\, healthcare professionals\, researchers\, partners and allies. After going virtual in 2020 with Global Genes LIVE! A RARE Patient Advocacy (un)Summit\, we are looking forward to seeing you all in person in San Diego 2021. \nJoin us for a variety of interactive and educational events\, meet-ups\, workshops and networking opportunities. Here you’ll have the  opportunity to connect and engage with others in the rare disease community\, while experiencing the sense of community and belonging we’ve missed so much. Gain insights about the latest in rare disease innovations\, best practices for advocating on an individual and organizational level\, and actionable strategies they can implement immediately to accelerate change.
URL:https://www.pfic.org/event/global-genes-rare-patient-advocacy-summit/
CATEGORIES:Advocacy Events,Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20210929T150000
DTEND;TZID=America/Halifax:20210929T160000
DTSTAMP:20260404T211551
CREATED:20210925T144919Z
LAST-MODIFIED:20210925T145106Z
UID:92423-1632927600-1632931200@www.pfic.org
SUMMARY:Impact of NICE Decision on PFIC Patients
DESCRIPTION:There has been a lot of talk around the recent NICE decision to not recommend reimbursement of odevixibat for treatment of patients with PFIC in the UK\, England and Wales. \nPFIC Network has been working with other advocacy organizations\, PFIC Specialists and Albireo to understand what this means for patients in the UK and abroad. \nDr. Richard Thompson of Kings College London will join PFIC Network leaders to give a brief informational session with an opportunity for Q&A session. \nRegister in advance for this meeting at this link. Language support and time zone support is available\, email info@pfic.org if requested. https://us06web.zoom.us/meeting/register/tZcucuuoqTwoHdcbAfDCm78GJ2aWiq7mUGv3
URL:https://www.pfic.org/event/impact-of-nice-decision-on-pfic-patients/
ORGANIZER;CN="PFIC Network%2C Inc.":MAILTO:emily@pfic.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211016T000000
DTEND;TZID=UTC:20211016T000000
DTSTAMP:20260404T211551
CREATED:20210128T044635Z
LAST-MODIFIED:20210128T044635Z
UID:90394-1634342400-1634342400@www.pfic.org
SUMMARY:Global Advisory Board
DESCRIPTION:Coordinated meetings from Europe to Australia to accommodate the PFIC population across the Globe. Global Advocates have the unique abilities to share needs that are specific to their own countries. Together\, we hope that we can create solutions to fit all resource gaps.
URL:https://www.pfic.org/event/global-advisory-board-3/
CATEGORIES:Global Advisory Board
ORGANIZER;CN="PFIC Network%2C Inc.":MAILTO:emily@pfic.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211018T160000
DTEND;TZID=UTC:20211018T170000
DTSTAMP:20260404T211551
CREATED:20211014T180401Z
LAST-MODIFIED:20211014T180401Z
UID:92538-1634572800-1634576400@www.pfic.org
SUMMARY:Kids Club Community Call
DESCRIPTION:Join in on the Kids Club Community call starting at 4 PM EST!
URL:https://www.pfic.org/event/kids-club-community-call/
CATEGORIES:Community Calls
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211019
DTEND;VALUE=DATE:20211020
DTSTAMP:20260404T211551
CREATED:20211014T180844Z
LAST-MODIFIED:20211014T180921Z
UID:92540-1634601600-1634687999@www.pfic.org
SUMMARY:PFIC Network State of the Union Address
DESCRIPTION:The Board of Directors will be hosting a Facebook Live event to update the community on PFIC Network events\, organization updates and milestones we have accomplished. We will also go over future plans we have in the works for the upcoming calendar year.
URL:https://www.pfic.org/event/pfic-network-state-of-the-union-address/
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