The International FPIES Association (I-FPIES) is a recognized 501(c)3 patient advocacy organization focused on providing evidenced-based, credible, reliable and medically sound information derived from evidence-based research and practices.
I-FPIES's research agenda includes peer-reviewed grants to allergists, immunologists, gastroenterologists, and other medical providers with a particular interest in Food Protein-Induced Enterocolitis Syndrome (FPIES). Our research initiatives are aimed at promoting early detection techniques, understanding the condition, and developing a streamlined approach to treating FPIES patients.
Within the first three years of our organization's development, I-FPIES accomplished the following milestones on behalf of the FPIES community:
- Creation of a specific ICD-10-CM code for Food Protein-Induced Enterocolitis Syndrome;
- Development of evidence-based diagnostic and treatment guidelines for FPIES;
- Establishment and advancement of broad-based educational programs for patients, families and treating physicians;
- Strategic partnerships with professional organizations, including the American Academy of Allergy, Asthma & Immunology. (AAAAI), the National Organization for Rare Disorders (NORD), American College of Allergy, Asthma & Immunology (ACAAI), the American Academy of Pediatrics (AAP), and the American College of Emergency Physicians (ACEP).
To continue with the spirit and mission of the organization, I-FPIES has expanded our goals to include:
- Development of peer-reviewed young investigator awards with major medical organizations;
- Promotion of research that develops an evidence-based understanding of the pathophysiology, prevalence, epidemiology, and long-term outcomes of FPIES;
- Supportive funding for early detection and diagnostic tools;
- Raise Congressional awareness of the research funding disparity for food allergic disorders, including FPIES, and advocate for increased allocation of funds to the National Institutes of Health (NIH);
- Increased and collaborative recognition of FPIES in university hospitals, clinics, and private practices;
- Active participation in a provider and patient reported global registry;
- Decreasing the time for onset of symptoms to diagnosis via worldwide outreach to educate providers, patients and families about FPIES;
- Engage with Capitol Hill and legislative regulation for the practical needs of those living with FPIES;
- Enhanced public recognition of the FPIES through educational program development and outreach services;
- Creation of an official FPIES call center to better support and assist physicians and families.