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Become an FPIES Advocate
Since 2011, The International FPIES Association (I-FPIES) has actively pursued positive change to alter the course of FPIES, raise awareness, and best serve the needs of our community. Your voice matters to I-FPIES; it goes toward making a real, impactful difference in the world of FPIES, from funding research to spreading the word about FPIES through the most powerful national and global channels.
We encourage you to join us as together we launch the next era of FPIES. If you’re considering becoming an FPIES advocate, here’s what you should know:
Initiatives on the Front Lines
Over the past eleven years, our organization has completed a number of exciting projects with many more on the horizon. Here are just a few examples of initiatives that are making a difference:
We were thrilled to release the first consensus guidelines for FPIES in March 2017. Our Medical Advisory Board partnered with other leading FPIES researchers across the globe to provide a course of action for diagnostic and treatment protocols as well as research needs for the condition. Just imagine the difference that will be made by having formal, consistent guidelines for the diagnosis, treatment, and management of FPIES!
EVERY pediatric allergist and gastroenterologist in the U.S has received a summary of the new FPIES guidelines. This was a monumental step in our ongoing effort to educate key providers about FPIES and ultimately reduce the amount of time that patients go without diagnosis. In addition, steps are in place to ensure that frontline providers and medical professionals worldwide will learn about the FPIES guidelines.
In 2013, we received exciting news approving a unique ICD-10-CM diagnosis code for FPIES, and the code was officially implemented in the fall of 2016. Requests for ICD-10 codes are not typically initiated by patient advocacy organizations, but in keeping with our progressive mission to create awareness of FPIES, we worked at the forefront of this request with CDC’s National Center for Health Statistics, and our work continued during the lengthy implementation process. This code is important for our community on so many levels: billing, insurance and medical records, disease management, treatment advances, research, national statistics, and more.
Research Holds the Answers
Research is the most valuable commodity available to the FPIES community, and I-FPIES actively funds FPIES research. As more studies are conducted, more data can be collected, leading to improved methods of diagnosing and treating FPIES. It is our greatest hope that research will lead us to the discovery of the primary cause for FPIES, followed by a cure.
We are expanding our development efforts to fund new research at major medical centers that will help to identify the root cause of FPIES while also advancing treatment options. Learn more about the FPIES studies that I-FPIES has participated in and funded here. For a broader list of our research goals and accomplishments, please visit our Research tab.
Did you know that I-FPIES is the official FPIES organization affiliated with the National Organization for Rare Disorders (NORD)? We’re also the only FPIES group recognized as a lay organization by the American Academy of Allergy, Asthma & Immunology (AAAAI).
We also maintain strong relationships with other professional organizations, including the American College of Allergy, Asthma & Immunology (ACAAI); the American Academy of Pediatrics (AAP); the American College of Emergency Physicians (ACEP); the European Academy of Allergy and Clinical Immunology (EAACI); and the World Allergy Organization (WAO).
Your Partnership Makes the Difference
I-FPIES exists to help FPIES patients and mobilize a global community that deserves recognition, support and answers. From our Medical Advisory Board to our dedicated team of parents, we are an organization of volunteers. I-FPIES does not currently receive any government funding. We rely on donations and service from the heart of our community—people like you—to accomplish these goals.
This is an exciting time for the FPIES community. If you’d like to make a difference, please consider becoming an FPIES advocate today. We appreciate your enthusiasm and support in helping I-FPIES make the world a safer, happier place for those living with FPIES!
To stay current on advocacy initiatives and to learn how you can get involved, please join our email list (scroll down to the footer of this website to subscribe) to receive our communications. You’ll receive e-mail alerts of important actions and be called to act in support of our advocacy agenda.
We need your voice, join us!
Please use one of the forms linked below. You’ll typically receive a response within six business days.