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DTSTART;TZID=UTC:20210913T160000
DTEND;TZID=UTC:20210913T170000
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CREATED:20210907T122813Z
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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
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DTSTART;VALUE=DATE:20210928
DTEND;VALUE=DATE:20210930
DTSTAMP:20260423T035644
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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
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DTSTART;TZID=America/Halifax:20210929T150000
DTEND;TZID=America/Halifax:20210929T160000
DTSTAMP:20260423T035644
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
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