PFIC

2019 Family Conference
2019-06-21 08:00 - 2019-06-25 17:00 UTC | Cincinnati, Ohio, Cincinnati, Ohio, USA
The PFIC Family Conference was the first ever opportunity for PFIC families worldwide to get together at one event. Thank you to all who traveled to attend, the weekend was extremely special!
This conference was made possible by the extreme generosity of the Allagille’s Syndrome Alliance who allowed us to join in their weekend. Also, a very special thank you to our Presenting Sponsor, Albireo Pharma and our supporting sponsor, Mirum Pharmaceuticals. Their support enabled 22 families struggling with PFIC to join together in one place.

PFIC Awareness Day 2019
2019-10-05 | IL
Inspired by our children and brought to life by our board members, this day is dedicated to igniting a fire in our community and bringing awareness to the debilitating itch that PFIC has on our children, our families and our lives.
On October 5, 2019 the PFIC Advocacy and Resource Network inspired the first annual PFIC Awareness Day. On this day, members of our community hosted individual fundraisers and awareness efforts in their own personal communities. In collaboration with Life Gave Lemons, the PFIC Network provided toolkits to the first 25 members of our community who expressed interest in hosting a fundraiser. Toolkits included stickers, bracelets, pens and information on how to create your own personal awareness day. Those who did not host fundraisers still were involved in spreading awareness on social media by introducing themselves and their PFIC story with the #pficawareness and #stoptheitch. We look forward to building on this day next year as we plan for the second PFIC Awareness Day!

WEBINAR Medical Management of PFIC: Nutrition and Medications
2020-09-28 14:00 - 15:00 UTC | IL

WEBINAR Surgical Management of PFIC: Diversions and Transplant
2020-09-28 15:00 - 16:00 UTC | IL

WEBINAR Transplant: Complications of by subtype
2020-09-29 14:00 - 15:00 UTC | IL

WEBINAR Transplant: Life After
2020-09-29 15:00 - 16:00 UTC | IL

Ambassador Hour-Americas
2020-10-01 19:30 - 20:30 UTC | IL

Ambassador Hour-Global
2020-10-02 02:00 - 03:00 UTC | IL

Update from Mirum: Maralixibat
2020-10-02 19:30 - 20:00 UTC | IL

Update from Albireo: Odevixibat
2020-10-02 20:00 - 20:30 UTC | IL

How To Tell Your Story
2020-10-10 18:00 - 19:30 UTC | IL

Registries
2020-10-17 11:00 - 12:00 UTC | IL

Understanding the Drug Development Process
2020-10-19 19:30 - 20:30 UTC | IL

WEBINAR Genetics of PFIC
2020-11-07 16:00 - 17:00 UTC | IL

WEBINAR: Mental Health-Coping Strategies for the Patient and Caregiver
2020-11-10 19:00 - 20:00 UTC | IL

Patient/Parent Advisory Board Meeting
2020-11-19 19:30 - 20:30 UTC | IL

PFIC 101
2020-12-08 19:30 - 21:00 UTC | IL

PFIC Community Call
2021-01-05 17:00 - 18:00 (America/New_York) | IL
PFIC Community Calls through January will be hosted by the PFIC Network as a place for members of the community to connect and ask questions. These calls are open to PFIC community members.
Topic: PFIC Community Call
Time: Jan 29, 2021 05:00 PM Eastern Time (US and Canada)
Join Zoom Meeting
https://zoom.us/j/7275588969
Meeting ID: 727 558 8969
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Global Advisory Board
2021-02-06 00:00, 2021-04-10 00:00, 2021-10-16 00:00 UTC | IL
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.

Board Of Directors Meeting
2021-02-08 20:00 - 21:30 UTC | IL
Monthly meetings of governance and direction for our organization. These meetings are for members of the Board of Directors, all other attendees are by invite only.

FDA Listening Session
2021-03-22 15:00 - 16:00 UTC | IL
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.

Patient & Parent Advisory Board
2021-04-08 15:00 - 16:00 UTC | IL
Monthly meetings for our patient and caregiver community to share feedback, resources and present new ideas to improve the quality of life of the PFIC Community.

Community Call - June
2021-06-22 15:00 - 16:00 UTC | IL
PFIC Network seeks to provide a place for our patient and caregiver community to chat and support each other. Beginning in April, we will host a monthly zoom chat rooms each with a theme that is of interest to members of our community. Please join us as we support each other through the devastations and sometimes even triumphs of PFIC. It not only motivates us to continue this work, but it provides a place for support for us, too. We look forward to seeing you.

EASL International Liver Congress 2021
2021-06-23 - 2021-06-26 | IL
We will be attending the virtual event offered by EASL. Patients and affiliates are encouraged to join to learn more! Details taken from website:

The 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.
We are pleased to announce new dates: ILC 2021 will take place from Wednesday to Saturday, 23–26 June.
Calling upon our international, multi-generational network and employing a range of learning methods, we will draw inspiration from the evolution of science. Together.

Virtual Family Conference
2021-07-16 - 2021-07-17 | IL
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!
Registration will be coming soon!

Kids Club-Zoom Chat
2021-09-13 16:00 - 17:00 UTC | IL
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.
These 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.
Kids 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

Global Genes Rare Patient Advocacy Summit
2021-09-28 - 2021-09-29 | IL
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:
Each 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.
Join 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.

Impact of NICE Decision on PFIC Patients
2021-09-29 15:00 - 16:00 (America/Halifax) | IL
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.
PFIC Network has been working with other advocacy organizations, PFIC Specialists and Albireo to understand what this means for patients in the UK and abroad.
Dr. Richard Thompson of Kings College London will join PFIC Network leaders to give a brief informational session with an opportunity for Q&A session.
Register 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
