Our Scientific Mission
We value connection, education, and support of research to empower our patient, provider, and research community. Our mission is to drive patient centered research for scientific advancements related to PFIC diseases. This way the patient, the family, their choices and their stories don’t go unseen or unheard. We value inclusivity of underserved parts of our community, so that the research can make a difference in their lives along with every part of our rare disease community.
As the PFIC Network expands, so does our mission to support science and research activities. This page highlights patient centered research activities as we enter into 2022.
Activities in Support of Our Scientific Mission
2022 Scientific Conference
The PFIC Network advocates the needs of the patient community and synergistically benefits from close partnerships with researchers and industry partners. The purpose of the PFIC Scientific Conference is to bring together patients, researchers, providers, and industry partners to co-create a strategic plan of shared research priorities. To learn more about the Scientific Conference, please visit the conference home page.
Research Grant Opportunity
The Small Grant Program is designed to contribute to this mission by funding research that leads to improvements in the lives of PFIC patients and their caretakers. The 2021 Small Grant Opportunity focuses on improving the assessment of aspects of PFIC diseases. Rigorous and reliable assessment is needed to facilitate the study of disease development and variability. Improved assessment can also support the development of a data base that permits the study of treatment response and that can contribute to the advancement of integrated treatment strategies.
Application period scheduled to open December 20, 2021.
Having a strong patient registry can make a world of difference for research in the rare disease space. The more patients registered, the more information there is and more research can be done. The patient registry offers a place for patients to have a voice and directly impact research.
To learn more or join the patient registry, click below: