CZI Award: A Look Back On Year One
Pictured above: Our team was able to meet and gain valuable insights from other CZI Rare As One Network grantees at the
2022 CZI Rare As One Annual Convening in San Diego, CA.
As we approach the one-year anniversary of our three-year $600,000 capacity building award from the Chan Zuckerberg Initiative (CZI), we are excited to reflect on the many successes we have already experienced through this amazing opportunity.
The Chan Zuckerberg Initiative started the Rare As One grant program to provide capacity support for rare disease patient-led organizations to build patient collaborative research networks. When we applied for this grant, we proposed the following aims to start developing this type of collaborative network for PFIC:
- Expand our global community engagement program and assess differences in access to diagnosis, treatment, and research opportunities,
- Increase our collaborations with overarching organizations to advocate for genetically informed diagnoses, and
- Professionalize our international patient registry to focus on genotype-phenotype correlations using patient-reported outcomes (PROs).
Since receiving the grant in November 2021, we have:
- Hired on an incredible team of staff to support these goals.
- Hosted our first Scientific Conference, which included patient-researcher roundtable discussions
- Launched the International Alliance and Project REACH initiatives to find country-specific advocacy solutions.
- Relaunched our patient registry on the REDCap platform, and built surveys that will produce valuable data for research. (We have also begun the process of translating the registry into Spanish, Italian, and Polish!)
- Joined the Global Genes Global Advocacy Alliance and hosted a booth at the European Society for Paediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) Annual Meeting.
The CZI award has catalyzed a new and spectacular phase of growth for the PFIC Network. What started in 2018 as a determined grassroots group of patient families united by a basic commitment to ensuring patients have access to resources and support has quickly blossomed into a passionate global network of PFIC families and researchers.
In the upcoming years, we hope to continue our work in advocacy and support while building partnerships between patients/caregivers, researchers, clinicians, and industry to develop a shared research agenda focused on outcomes most meaningful to PFIC families.
We look forward to discovering what more amazing things we can accomplish as a community.