International Alliance Update: February 2024
We would like to take a moment to highlight some of the recent work being done by members of our International Alliance. These international advocates embody the #strongertogether spirit and we are grateful for their work to improve the lives of PFIC patients worldwide. The International Alliance is a group of international PFIC advocates and organizations that work together to address resource needs, as well as advocacy and policy issues specific to each participating country.
Melanie Karakaidos (Australia)
Melanie helped found PFIC Network and recently created PFIC & Related Disorders Australia, an organization dedicated to advocating for and supporting PFIC patients in Australia and New Zealand. We are honored to be able to support her work through our Global Affiliate Scholarship program. Melanie is using her scholarship to formally register her organization as a charity in Australia. Formal charity recognition is an important step to making sure the Australian government takes the needs of PFIC patients seriously.
Bernadetta Skora (Poland)
In 2023, Bernadetta attended a PFIC meetup we hosted at the ESPGHAN (European Society for Paediatric Gastroenterology Hepatology and Nutrition) Annual Meeting. Researchers at the meetup were able to provide her with comprehensive patient data as she lobbies the Polish government for access to crucial PFIC treatments. Bernadetta has also been a key mobilizer to recruit Polish PFIC patients to enroll in our patient registry, which was recently translated into Polish. Her efforts contributed to a positive decision by the Polish government to reimburse Bylvay for patients in Poland, hopefully by the end of the year.
India Support Group
As a product of Project REACH, community members in India identified the need for a support group dedicated to the needs of the PFIC community living throughout India. Led by Dr. Jagadeesh Menon and supported by community ambassadors- Mukesh Khandelwal and Shoukath, the group has a dedicated space to connect both online and live through monthly support group meetings in both English and Hindi. To find out more or to join the group, please contact us at info@pfic.org!
PFIC Italia
Global Assistance Fund
At the beginning of the International Alliance, conversations with advocates made it clear that expanding our Financial Assistance Program to be able to assist applicants outside of the US was a high priority. Thanks to a partnership with the Children’s Liver Disease Foundation, we have been able to help PFIC families in the UK, but we lacked the administrative infrastructure to assist those in other parts of the world. Last year, a generous donation from PFIC Italia helped to make this dream a reality. This past year, we supported PFIC families in Pakistan, the UK and the US!
Advocacy in Italy
PFIC Italia founder Francesca Lombardozza presented at multiple Italian conferences this past fall. At the SIGENP (Italian Society of Gastroenterology, Hepatology and Nutrition) Annual Meeting, she gave a presentation about the history of PFIC Italia, their current initiatives and how her organization works with PFIC Network and the International Alliance to suppport PFIC families all over the world. Francesca also signed the society’s new mutual collaboration pact on behalf of PFIC Italia. SIGENP hopes to promote better communication & stronger relationships between patients & the scientific societies that specialize in their diseases. Clinicians and researchers are some of our strongest partners in advocacy, so we are excited for Italian patients to have the opportunity for deeper partnerships with the experts who treat PFIC.
Check out Francesca’s SIGENP Presentation:
*Video is in Italian. Youtube has auto-translate close captioning available.
Francesca was also recently interviewed by Osservatorio Malattie Rare, the first news agency in Italy dedicated to news about rare diseases and tumors:
“In Italy, unfortunately, the number of cases has increased, but the positive aspect is that now, after the diagnosis, there is immediately a network that we have set up to support families. People who for years and years have been facing managing this disease alone, they finally found a support network,” explains Francesca Lombardozzi, mother of Eva Luna, a four-year-old girl suffering from PFIC.
Osservatorio Malattie Rare, “Progressive familial intrahepatic cholestasis: the International Alliance of Associations is born”