PFIC International Alliance in Action: A Special Trip to ESPGHAN!
“Alone we are strong… together we are stronger.” – Unknown
Event Snapshot
This May, PFIC International Alliance members had the honor of participating for a second year in-a-row at the annual meeting of the European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN).
PFIC Advocates Emily Ventura (Parent, PFIC Network Executive Director), Francesca Lombardozzi (PFIC Italia), Bernadetta Skora (PFIC Polska), Emily Wong (UK), and Melissa Kochanowsky (PFIC Network Program Manager) traveled to Vienna, Austria to represent the global PFIC patient community.
Together, they hosted a booth throughout the entire four-day event and facilitated an International PFIC Meet & Greet!
International Alliance & Global Affiliate Spotlight
You might recognize Emily Wong, Francesca, and Bernadetta (pictured above in order) from our virtual PFIC International Alliance meetings. These PFIC parents/superheroes hail from England, Italy, and Poland.
Emily, Francesca, and Bernadetta have all made amazing contributions for PFIC advocacy, both in their own countries and internationally.
- Emily is a strong PFIC advocate and an active supporter of the Children’s Liver Disease Foundation (CLDF), a charity in the UK dedicated to fighting all childhood liver diseases. She recently raised £5000 for the CLDF by running the London Marathon!
- Francesca founded the PFIC Italia Network. She also co-created and co-chairs the PFIC International Alliance. Her organization has provided financial support to PFIC families globally, created PFIC educational resources in Italian, and advocated to the Italian government for regulatory approval of PFIC treatment.
- Bernadetta started PFIC Network Polska in 2021. She has created PFIC educational resources in Polish, and has played an active role in connecting PFIC families and advocating to the Polish government for regulatory approval of PFIC treatment.
Their work is a special reminder that any individual can help support the global PFIC community in their own unique way. Even the smallest of acts can produce major ripple effects! Just by participating in the virtual PFIC International Alliance meetings, these parents from different countries were able to meet each other, realize their shared vision for a global get-together with researchers, and bring it to life!
This event also marked the first time they had ever been in-person together. Having the ability to connect and spend time with peers who truly understand what it means to live with PFIC is an invaluable experience in and of itself.
Did you know? PFIC Network supports travel costs for patient advocates to participate at events like ESPGHAN through the Global Affiliate Scholarship Program. This program aims to equip patients and families around the world with the resources they need to make an impact through advocacy. If you would like to learn more about how you can get involved in advocacy, contact melissa@pfic.org!
Bridging Borders by the Booth
ESPGHAN convenes healthcare providers, researchers, and industry professionals from countries in Europe and around the world. The PFIC International Alliance hosted a booth in the ESPGHAN exhibit hall alongside other amazing organizations like the European Liver Patients Association (ELPA) and the European Reference Network for Pediatric Transplantation (ERN – TRANSPLANTCHILD).
Having a booth at events like these provides a critical opportunity to share the work of PFIC Advocates so that we can open doors for new collaborations. It is also one of the most effective ways to get patient resources directly into the hands of doctors.
More than 30 healthcare providers and researchers at ESPGHAN signed up to receive our communications! We also passed out numerous pamphlets and educational brochures in multiple different languages, including material in Italian and Polish from PFIC Italia and PFIC Polska.
Fun Fact: The PFIC Educational Brochure is translated into 19 languages!
Rooting for Research
It was amazing to see how many professional researchers around the world are pursuing PFIC! Some of them even presented their PFIC research findings during the event. Attending scientific meetings like ESPGHAN is a great way to see cutting edge PFIC research unfold in real time and identify experts in the field to support and engage for PFIC advocacy and research initiatives.
Keeping up with the science can be very difficult. Many of us do not have the time (or the PhD…) to read and digest the constant stream of research publications for PFIC. Watching presentations at meetings can at least provide a helpful snapshot of what some of the experts are up to, and can also reveal ways in which our community can support their work.
The Power of Global Partnerships for PFIC
There are many stakeholders that must come together to make research in rare diseases like PFIC successful.
According to the U.S. Agency for Healthcare Research and Quality1, a stakeholder is a “person or group with a vested interest in a particular clinical decision, including:
- Patients, caregivers, and patient advocacy organizations
- Clinicians and their professional associations
- Institutional health care providers, such as hospital systems and medical clinics
- Government agencies
- Purchasers and payers, such as employers and public and private insurers
- Health care industry representatives
- Health care policymakers at the Federal, State and local levels
- Health care researchers and research institutions.”
It is imperative that we build a strong network of PFIC stakeholders so we can leverage our shared interest in the disease to build collaborative partnerships for improved and accelerated outcomes in treatment and research. One of the essential ways we can build this strong network is by creating opportunities for our community of advocates and stakeholders to interact and learn from each other, like our Meet & Greet at ESPGHAN!
The idea to organize a PFIC International Meet & Greet at ESPGHAN was born out of the PFIC International Alliance. The meeting was planned, coordinated, and made successful thanks to the Alliance members and patient advocates Francesca, Bernadetta, and Emily Wong and Emily Ventura.
As a result, they were able to invite and connect with clinicians, researchers, and industry representatives from their own countries for discussions on advocacy, healthcare, and research; and gain valuable insights from efforts in other countries. The meeting helped to strengthen familiar relationships and cultivate new ones amongst the variety of PFIC stakeholders attending.
Building and stewarding partnerships is an essential form of advocacy that must not be limited by borders. We have so much potential to unlock new frontiers in PFIC advocacy and research if we can harness the combined knowledge and strength of our global stakeholder community.
Come advocate with us! Join our 2023 virtual International Alliance meeting on Saturday, July 15th. Click here to learn more information about the International Alliance and find the links to register for the meeting.
Want to Represent with some Advocate Swag? Check out PFIC parent Alex Perez’s Etsy store Chosen & Created: Express Your Purpose!
(At a Loss for) Final Words
Attending events like ESPGHAN provides a critical reminder that our PFIC community is strong.
We are not alone. We are amongst a community of patients, families, and friends; nurses and doctors; researchers at the bench, at the computer, at clinical trials – and we are in every corner of the world!
There is an unspoken power that is generated when our community comes together. It is a power composed of love, grief, curiosity, fear, compassion, and hope.
It is a power that is realized when we see another PFIC family for the first time and feel like we’re reuniting not with strangers, but with old friends. When we see doctors and researchers at the podiums and roundtables of events like these, and notice the determination in their eyes to find answers to the same questions we have.
In these moments when we spark power together, we produce a momentum that is unstoppable.
