EoE Knowledge Exchange Summary Report

Objectives

To build on existing efforts and help drive momentum in EoE, the Global Allergy & Airways Patient Platform (GAAPP), Regeneron, and Sanofi Genzyme co-hosted the first virtual EoE Knowledge Exchange on September 16, 2021. The EoE Knowledge Exchange involved global, regional, and national PAGs and medical societies, and aimed to

1. Bring together key stakeholders within the EoE community and increase collaboration
2. Generate new insights to help increase global recognition of EoE
3. Establish global priority areas and identify activities needed to raise

Background

Eosinophilic esophagitis (EoE) is a chronic and progressive type 2 inflammatory disease that damages the esophagus and prevents it from working properly.(1) Over time, excessive type 2 inflammation causes scarring and narrowing of the esophagus, making it difficult to swallow.(2) Approximately 1 in 1,000-2,000 people live with EoE around the world(3); however, this is expected to increase.(2,3)

Currently, EoE is frequently confused for other, more common digestive conditions with similar symptoms, such as acid reflux or gastroesophageal reflux disease (GERD). As a result, people living with EoE often face delayed or incorrect diagnoses, suggesting the prevalence of the disease is higher than currently understood.4

There are several patient advocacy groups (PAGs) and medical societies driving efforts in EoE, with many doing so as part of a broader allergy agenda.

However, as EoE is a relatively new disease, the patient community remains small and disparate compared to those of other more well-known chronic conditions. EoE has also been absent from policy debates, and while EoE is occasionally covered under the broader allergy and airways policy agenda, the specific needs of EoE patients are overlooked as more prevalent conditions, like food allergies, take precedence. As a result, awareness around EoE is limited and there remains a high unmet need amongst patients.

Participants

The EoE Knowledge Exchange brought together 13 representatives from PAGs and medical societies from across eight countries, providing representation from North America, Europe, and Australia.

• Tonya A. Winders, President, Global Allergy & Airways Patient Platform (GAAPP)
• Maryam Hassimi, Global Public Affairs Lead, Immunology, Sanofi Genzyme
• Ilana Tabak, Director, Patient Advocacy, Immunology, Regeneron
• Rebeca Andrádas, Head of International Projects, Spanish Association for EoE (AEDESEO)
• Dr. Arjan Bredenoord, President, European Society of Eosinophilic Oesophagitis (EUREOS)
• Amanda Cordell, Trustee & Chair, EOS Network
• Eleanor Garrow-Holding, President & CEO, Food Allergy and Anaphylaxis Connection Team (FAACT)
• Dr. Thomas Eiwegger, Chair, Biologicals Working Group, European Academy of Allergy and Clinical Immunology (EAACI)
• Jennifer Gerdts, Executive Director, Food Allergy Canada
• Dr. Roberta Giodice, President, Italian Association of Families Against Eosinophilic Esophagitis (ESEO)
• Sarah Gray, Founder & President, AusEE, Inc.
• Ellyn Kodroff, Founder, Campaign Urging Research for Eosinophilic Disease (CURED)
• Dr. Salvatore Oliva, Italian Association of Families Against Eosinophilic Esophagitis (ESEO)
• Susanna Palkonen, Director, European Federation of Allergy and Airways Diseases Patients Associations (EFA)
• Dr. Imke Reese, Scientific Advisory Board Member, German Allergy and Asthma Association (DAAB)
• Mary Jo Strobel, Executive Director, American Partnership for Eosinophilic Disorders (APFED)

Summary report

Download the full Summary Report with key takeaways, activities to improve EoE Care, conclusions, and what can you expect looking forward.

References

1. Abonia JP, et al. Eosinophilic esophagitis: rapidly advancing insights. Annu Rev Med. 2012;63:421-434.
2. De Matteis, Arianna et al. “Eosinophilic Esophagitis in Children: Clinical Findings and Diagnostic Approach.” Current pediatric reviews 2020;16(3): 206-214. doi:10.2174/1573396315666191004110549
3. Dellon ES. Epidemiology of eosinophilic esophagitis. Gastroenterol Clin North Am. 2014;43(2):201-218.
4. Abe Y, et al. Diagnosis and treatment of eosinophilic esophagitis in clinical practice. Clin J Gastroenterol. 2017;10(2):87-102.
5. Chehade M, Jones SM, Pesek RD, et al. Phenotypic characterization of eosinophilic esophagitis in a large multicenter patient population from the Consortium for Food Allergy Research. J Allergy Clin Immunol Pract. 2018;6(5):1534-1544.e5. doi:10.1016/j.jaip.2018.05.038