FPIES

Bridging the gap

“Meet the Researcher” is an I-FPIES program aimed to bridge the gap between patient, family, provider, and researcher. Advancing a diagnostic and treatment is at the forefront of our research mission. Patients and families do not often have an opportunity to connect with researchers with an interest in FPIES, resulting in advancement delays and continued suffering. This series connects our research and patient communities through live webinars, surveying patients directly and helping to support their engagement and input in studies. Our goal is to connect our patient community in meaningful ways, from research, to patient recruitment and engagement in clinical trials making our patient community the ultimate stakeholder in the future of diagnostics and treatment of FPIES. 
 
Each month IFPIES will feature an FPIES researcher tasked at explaining their study, enrollment opportunities and benchmark results. We invite the patient community to engage in a LIVE Q&A to share experiences, insights and needs with the study coordinators to ensure that FPIES research is patient-centric, diverse, inclusive and addresses the realities of living with Food Protein-Induced Enterocolitis Syndrome. 

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On our new “Meet the Researcher” tab at FPIES.org, all open and completed studies and supplemental publications will be video-recorded and easily accessible to patients and caregivers. Are you an FPIES researcher with interest in participating or a potential program sponsor? Email us at contact@fpies.org to learn more.

Are You an Adult with FPIES?

Researchers from the Division of Allergy at the University of Rochester, Hassenfeld Children’s Hospital at NYU Langone, Texas Children Hospital, Boston Children’s Hospital and Children’s Hospital of Philadelphia, in collaboration with International FPIES Association (I-FPIES: www.fpies.org), invite you to complete an online questionnaire to better characterize the experience of adults with FPIES.

Your answers will help the medical community to better understand your experience with adult FPIES and other adults affected by this disease. If you are interested in participating in this study, please click this link: Adult FPIES Questionnaire to answer the interactive questionnaire. There is an information letter that describes the study in more detail once you start the survey.

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