Research Announcement: The PFIC Network Research Grant Program is Now Open

Today the PFIC Network announced the start of the new Research Grant Program, funding research on PFIC diseases. The Research Grant Program has been a big goal for the organization for a long time, and today it is finally coming to fruition. We are happy to announce the official release of the Grant Program and our first small grant opportunity. This opportunity provides funds for research in the field of PFIC diseases. In this cycle PFIC Network will award one small grant with a budget limited to $30,000. 

How was this grant program made possible?

This grant program was made possible by the support and engagement of the amazing PFIC community. We asked the PFIC patient community what their priorities in research are. We asked the PFIC community to donate and fundraise to support this cause. Because of your efforts and support, the PFIC Network is now able to offer funding for research that looks to find answers for the patient community’s most pressing questions. We want to thank our entire PFIC Community for supporting our scientific mission and helping us reach this important milestone.

What Is the Purpose of this Grant?

PFIC Network is committed to improving treatment options, slow disease progression, and ultimately finding a cure for PFIC diseases. 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.

This grant invites applications that focus on improving the post-diagnosis assessment of aspects of PFIC diseases including but not limited to (1) aspects and severity of pruritus, (2) secondary symptoms, (3) the psychological and emotional burden of PFIC diseases on patients and/or their caretakers, or (4) the socio-economic burden of PFIC diseases on patients and/or their caretakers. The purpose of this funding opportunity is to promote the development of assessment tools or the systematic and reliable assessment of these aspects with the aim to better understand the complex impact PFIC diseases have on patients and their caretakers. 

Patient led advocacy and research is essential to the rare disease space. Data suggests that patient led research, such as the grant program we are funding, leads to accelerated medical research. We hope to continue supporting this research along with our patient community.

To learn more about the Small Research Grant, go to our PFIC Small Research Grant Page, or to see the application, you can go to PFIC Small Research Grant Application.

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About the PFIC Network

In September 2018 pfic.org became the PFIC Network, Inc., a 501c3 charitable organization. PFIC Network is run by patients and caregivers with a strong connection to families all over the world. Our mission is to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. For more information, please visit us at www.pfic.org.