Calendar of Events
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Global Genes Rare Patient Advocacy Summit
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, […]
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Impact of NICE Decision on PFIC Patients
Impact of NICE Decision on PFIC Patients
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. […]
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Global Advisory Board
Global Advisory Board
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.
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PFIC Network State of the Union Address
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.
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