About: This PFIC Support Contact Directory is made possible by collaborative efforts between patients, affiliates and support organizations worldwide that provide resources for PFIC patients and families. We hope that through further collaboration, we will grow this list to be a robust resource for all.
Goal: Progressive familial intrahepatic cholestasis (PFIC) is classified as an ultra-rare disease. It can be challenging to find the various types of support and resources needed to manage this complex diagnosis. The goal of the Global PFIC Support Contact Directory is to help ease the burden of making connections when it matters most.
PFIC-Specific Advocacy Groups
Parent/Patient Founded Groups
PFIC Network is a parent-founded advocacy organization based in the United States, serving the global PFIC community. In many regions, PFIC parents and patients have stepped up to provide local advocacy and support, connecting with PFIC Network through the PFIC International Alliance. While the level of advocacy varies by region and not all groups hold formal nonprofit or charity status, these dedicated community advocates work to connect PFIC families with the resources available to them, whether through their regional organization, PFIC Network, or their own local connections.
Australia
Contact: Melanie Karakaidos
Website: https://pficrdaustralia.org/
Email: melanie@pficrdaustralia.org
Facebook page: https://www.facebook.com/groups/453930091419767
Canada
Contact: Walter & Alexandra Perez
Email: Walter@pfic.org; perez.alexandra@hotmail.com
Contact: Lisa Crompton
Email: Lisa@pfic.org
Germany
Contact: Nikolina Adamic
Email: adaminikolina@gmail.com
Facebook: https://www.facebook.com/pfic.de
PFIC Italia
Contact: Francesca Lombardozzi
Email: pficitalia@hotmail.com
Facebook: https://www.facebook.com/groups/1236390723382907
Poland
Contact: Bernadetta Skora
Email: pficnetworkpolska@gmail.com
Facebook: https://www.facebook.com/PFIC-Network-Polska-100504395413610
Rare Disease Umbrella Organizations
These umbrella organizations provide broad advocacy, education, and policy support for individuals and families affected by rare diseases and liver conditions. Although they support many conditions beyond PFIC, these organizations offer valuable resources, national representation, and connections that can support PFIC families within their region or globally.
Worldwide
Global Genes – Global Advocacy Alliance
Global Genes is a global non-profit advocacy organization for individuals and families fighting rare and genetic diseases. PFIC Network is a member of the Global Genes Global Advocacy Alliance.
- Website: https://globalgenes.org/
- Facebook: https://www.facebook.com/globalgenesInstagram: https://www.instagram.com/globalgenes/
Europe
Eurordis-Rare Diseases Europe
Eurordis has a mission to work across borders and diseases to improve the lives of all people living with rare diseases.
- Website: https://www.eurordis.org/
- Facebook: https://www.facebook.com/eurordis
- Instagram: https://www.instagram.com/eurordis/
Europe
European Reference Network(ERN) -ERN RARE-LIVER
European Reference Networks (ERNs) are virtual networks involving Reference Centres across the EU and Norway. The aim of the ERNs is to tackle complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources. ERN RARE-LIVER is one of 24 such networks, specifically focused on connecting over 50 expert medical centers across Europe to improve diagnosis and treatment for patients with rare liver diseases.
- Website: https://rare-liver.eu
Country-Specific Organizations
These organizations provide support, education, and resources related to liver disease and/or rare conditions within a particular country. These groups help individuals and families navigate healthcare systems, access region-specific services, and connect with support in their area.
Australia
Rare Voices Australia
Rare Voices Australia is the national peak advocacy organization representing Australians living with a rare disease, working to influence policy and systems to improve outcomes for patients, families, and caregivers.
- Website: https://rarevoices.org.au/
- Email: info@rarevoices.org.au
- Facebook: https://www.facebook.com/RareVoicesAustralia/
- Instagram: https://www.instagram.com/rarevoicesaustralia/
Liver Kids Inc.
Liver Kids Inc. is an Australian nonprofit dedicated to improving outcomes for children with liver disease through awareness, support, and fundraising initiatives.
- Website: https://liverkids.wordpress.com/
- Contact: https://liverkids.wordpress.com/contact/
- Facebook: https://www.facebook.com/liverkidsaustralia/
- Instagram: https://www.instagram.com/liverkidsaustralia
Canada
Canadian Liver Foundation
Canadian Liver Foundation is committed to advancing liver health through research, education, and practical resources that empower people to protect and care for their liver.
- Website: https://liver.ca/
- Facebook: https://www.facebook.com/LiverCanada
- Instagram: https://www.instagram.com/LiverCanada
Canadian Organization for Rare Disorders
is Canada’s national network representing people with rare disorders, advocating for health policy and a healthcare system that meets their needs.
- Website: https://www.raredisorders.ca/
- Email: info@raredisorders.ca
- Facebook: https://www.facebook.com/RareDisorders
- Instagram: https://www.raredisorders.ca/contact
India
Organization for Rare Diseases India (ORDI)
Organization for Rare Diseases India (ORDI) is dedicated to uniting the rare disease community, reducing inequalities, and ensuring equitable access to resources for people living with rare diseases in India.
- Website: https://ordindia.in/
- Email: contactus@ordindia.in
- Facebook: https://www.facebook.com/ordindia
- Instagram: https://www.instagram.com/ordindia.in/
IndoUSrare
IndoUSrare is dedicated to accelerating access to rare disease therapies by fostering collaboration between stakeholders in the United States and India and addressing gaps in clinical trial representation and treatment access. They also provide a financial advocacy program, with more information available at this link, https://www.indousrare.org/financial-advocacy/.
- Website: https://indousrare.org/
- Email: admin@indousrare.org
- Facebook: https://www.facebook.com/indousrare/
- Instagram: https://www.instagram.com/indousrare/
Northern Ireland
Northern Ireland Rare Disease Partnership
Northern Ireland Rare Disease Partnership is working to ensure no one is disadvantaged by the rarity of their condition, driving transformational change for people living with rare diseases, their families, and those who care for them.
United Kingdom
Children’s Liver Disease Foundation
Children’s Liver Disease Foundation supports children and families affected by liver disease through information, emotional support, research funding, and advocacy, now part of the British Liver Trust to provide lifelong support for all liver conditions.
- Website: https://childliverdisease.org/
- Email: info@childliverdisease.org
- Facebook: https://www.facebook.com/CLDFonline/Instagram: https://www.instagram.com/cldfonline/
United States
American Liver Foundation
The American Liver Foundation facilitates, advocates, and promotes education, support and research for the prevention, treatment, and cure of liver disease.
- Website: https://liverfoundation.org/
- Facebook: https://www.facebook.com/liverinfo
- Instagram: https://www.instagram.com/americanliver
GI Kids
Patient education information from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) – an organization of more than 2,600 pediatric gastroenterologists from all over North America.
- Website: https://gikids.org/
- Email: naspghan@naspghan.org
- Facebook: https://www.facebook.com/GIKidsOrgInstagram: https://www.instagram.com/gikidsorg/
National Organization for Rare Disorders
NORD is dedicated to supporting education, elevating care, advancing research, and driving policy for rare diseases.