Raise Your Voice!
Show Support for Better Medical Nutrition Coverage
The Medical Nutrition Equity Act (S-1194, HB-2587) is a piece of legislation currently being championed by medical professionals and patient advocacy groups that aims to improve coverage of medical nutrition (such as elemental formula) for individuals affected by a variety of conditions, including FPIES. Learn how you can get involved TODAY!
At The FPIES Foundation, we not only recognize the need for research to help future children and their families, but we also recognize the need to help our families and medical professionals now by providing education, advocacy and support resources, online and in our global community. We will:
Hear the voices of families and doctors,
Educate and support in order to better meet the ongoing needs of the FPIES community,
Lobby for improved standards of care in FPIES treatment, and
Provide funding for research and other professional efforts
The Global FPIES Patient Registry is operated in partnership with Altavoice and collects data from over 600 participants from the FPIES community, worldwide, who complete surveys related to a diagnosis of FPIES. The de-deintified data can be viewed for free by participants, as well as professionals who register via the practitioner and research portal. Join TODAY and learn insights from the global FPIES community’s experiences with this rare diagnosis.
FPIES 101 for Providers
Increase your understanding of Food Protein-Induced Enterocolitis Syndrome by reviewing these essential resources below.
Learn about the diagnosis, available for download in three languages:
APGNN Conference Recorded Presentation: About FPIES by Dr. Glenn Furuta/FPIES Parents Perspective with Joy Meyer and Amanda LeFew, Co-Directors of The FPIES Foundation.
Read a list of commonly asked questions about FPIES and the answers of from esteemed Medical Advisory Board. Available for download in three languages.
Acute FPIES reactions cause severe vomiting and/or diarrhea 2+ hours after ingesting a trigger food. This can cause dehydration and may progress to shock, a life-threatening reaction.
Print Resources for Your Clinic
All resources are available for download; you may also request copies be sent to your clinic for patient and/or staff education. Contact us today!
Awareness cards can convey information quickly and easily to patients, as well as their families and community supports.
A great resource for getting started, the New Patient Packet provides an overview of FPIES for families wanting to learn more. Printouts of community awareness cards are included.
- New Patient Packet (PDF)
We are proud to present the nutrition professionals resource page!
You will find tools and resources, such as:
Our Current Programs Include:
- Maintaining the FPIES Global Patient Registry, via the PIN program through Altavoice
- Providing a database of FPIES-friendly Medical Providers from around the globe, for use by families seeking medical care for their children and other providers seeking professionals knowledgeable about FPIES for improved patient care. Register your name today!
- Providing a toolbox for parents that integrates interactive tools with resources for navigating the day-to-day aspects of living with FPIES– empowering families, nurturing connections.
- Providing funding for professional efforts exploring diagnosis and management; working toward improved outcomes for this often misunderstood and misdiagnosed chronic illness
- Supplying information at conferences and scientific meetings to further awareness and to promote FPIES education for medical professionals.
- Hosting an informative website for parents of children diagnosed with FPIES, the medical community who serves them, and the global community on the whole
- Conducting educational in-services for families and the medical community, addressing basic, up-to-date information involving FPIES recognition, diagnosis and management.
- Providing a free Community Newsletter for newly diagnosed families.
Our Future Goals Include:
- Continue to promote FPIES awareness in local and global communities
- Funding ongoing outreach programs for families and medical professionals
- Lobbying appropriate organizations to create standardized protocols for effective diagnosis and treatment of FPIES.
- Creating resources to encourage successful accommodations for affected children to safely participate in school and community activities
- Continuing to provide funding for professional efforts exploring diagnosis and management; working toward improved outcomes for this often misunderstood and misdiagnosed chronic illness
- Continuing to supply information at conferences and scientific meetings to further awareness and to promote FPIES education for medical professionals.
The FPIES Foundation Medical Advisory Board
Educational information provided by The FPIES Foundation is fact checked for accuracy by our medical advisory board, consisting of multidisciplinary leaders in FPIES research, treatment, and support.
Sakina S. Bajowala, MD is Board-Certified in Allergy and Immunology. Kaneland Allergy and Asthma Center is Dr.Bajowala’s practice in North Aurora, Illinois.
Harumi Jyonouchi, MD is Board-Certified in Allergy and Immunology. Dr. Jyonouchi is researcher who sees her patients at Children’s Hospital at Saint Peters’ University Hospital in New Bruinswick, New Jersey.
John J. Lee, MD is Board-Certified in Allergy and Immunology. Dr. Lee is a Co-Director of the EGID Program (Eosinophilic Gastrointestinal Disorders) at Children’s Hospital Boston, Massachusetts.
Fred Leickly, MD, MPH is Board-Certified in Allergy and Immunology. Dr.Leickly is a Professor of Clinical Pediatrics at James Whitcomb Riley Hospital for Children at Indiana University School of Medicine in Indianapolis, Indiana.
David R. Naimi, DO is Board-Certified in Allergy and Immunology. Dr. Naimi is an Allergist at Northwest Asthma & Allergy Center and is a Clinical Assistant Professor of Pediatrics affiliated with Seattle Children’s Hospital. His practice is based in Everett, Washington.
Christopher Parrish, MD is Board-Certified in Allergy and Immunology and is an Assistant Professor of Pediatrics and Internal Medicine in the Division of Allergy and Immunology at the University of Texas Southwestern Medical Center. He cares for patients with non-IgE-mediated food allergies in the Food Allergy Center at Children’s Health in Dallas, Texas.
Wayne Shreffler, MD, PhD is Board-Certified in Pediatric Allergy and Immunology and Chief of Pediatric Allergy & Immunology at Massachusetts General Hospital Dr.Shreffler is an Associate Professor of Pediatrics at Harvard Medical School; Director of The Food Allergy Center; and Principal Investigator of the Center for Immunology and Inflammatory Diseases at Massachusetts General Hospital , Massachusetts.
Luqman Seidu, MD is Board-Certified in Pediatrics and Allergy and Immunology. Dr. Seidu is an Allergist at Georgia Allergy, Immunology and Asthma and Adjunct Professor in Atlanta, Georgia.
Glenn T. Furuta, MD is Board certified in Pediatric Gastroenterology. Dr.Furuta is a Gastroenterologist at Children’s Hospital Colorado, a Professor of Pediatrics and the Director of the Gastrointestinal Eosinophilic Diseases Program at National Jewish Health in Denver, Colorado
Benjamin D. Gold, MD is Board Certified in Pediatric Gastroenterology. Dr. Gold is a Gastroenterologist at Children’s Center for Digestive Healthcare, LLC (GI Care for Kids) in Atlanta, Georgia.
Sergio Negre Policarpo, MD, PhD. is the head of the Pediatric Gastroenterology and Nutrition Unit at Quiron Valencia Hospital Pediatric Department- UPIQ (Valencia, Spain) and an Associate Clinical Professor at Catholic University of Valencia, Spain.
Qian Yuan, MD, PhD is a Board-Certified Pediatrician in Pediatric Gastroenterology and Nutrition. Dr.Qian Yuan is a Clinical Director at Massachusetts General Hospital Food Allergy Center and an Assistant Clinical Professor in the Department of Pediatrics at Harvard Medical School Boston, Massachusetts.
Bailey Koch, RD, CSP, LD is a Registered and Licensed Dietitian. Bailey is a Board Certified Specialist in Pediatric Nutrition and successfully completed the ELL Foundation PAC Food Allergy and Intolerance Training Certification for Dietitians. She is a part of the team at Children’s Center for Digestive Healthcare and Atlanta Pediatric Nutrition, Inc. in Atlanta, Georgia.
Tara McCarthy, MS, RD, LDN is a Registered Dietitian and Licensed Clinical Nutrition specialist in The Nutrition Center and Eosinophilic Gastrointestinal Disease (EGID) program at Boston Children’s Hospital. Tara is also an Instructor at Northeastern University in Boston, Massachusetts.
Why are you seeing polls at The FPIES Foundation’s site?
- Polls will help us get to know you and your clinical practice better!
- Polls will help us to get a clearer picture of how children affected by FPIES and their families are seen in a clinical setting
- Polls will help to capture key factors involved in the clinician/patient/family dynamic and how they relate to the diagnosis of FPIES