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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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20231005
DTEND;VALUE=DATE:20231006
DTSTAMP:20260417T082251
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;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260417T082251
CREATED:20211213T155102Z
LAST-MODIFIED:20211213T155416Z
UID:93110-1646006400-1646092799@www.pfic.org
SUMMARY:Rare Disease Day
DESCRIPTION:Raising awareness and generating change for the 300 million people worldwide living with a rare disease\, their families and carers. \nRare disease day brings people with all rare diseases together in unity to show that just because you have a rare disease\, does not mean you are alone.
URL:https://www.pfic.org/event/rare-disease-day/
CATEGORIES:Advocacy Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210928
DTEND;VALUE=DATE:20210930
DTSTAMP:20260417T082251
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=UTC:20210322T150000
DTEND;TZID=UTC:20210322T160000
DTSTAMP:20260417T082251
CREATED:20201226T141937Z
LAST-MODIFIED:20230615T160529Z
UID:89862-1616425200-1616428800@www.pfic.org
SUMMARY:FDA Listening Session
DESCRIPTION:An FDA Listening Session is an opportunity for those who experience a disease (such as PFIC) as a patient of caregiver to speak to the FDA. This allows the FDA the opportunity to understand the desperate need for further treatments to be developed. Listening sessions are used as a resource for these regulators to engage with patients or their advocates so that the patient community can share their experience with their disease by talking directly to FDA staff.
URL:https://www.pfic.org/event/fda-listening-session/
CATEGORIES:Advocacy Events
ORGANIZER;CN="PFIC Network%2C Inc.":MAILTO:emily@pfic.org
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