As we reflect on the first half of 2025, we’re overwhelmed with gratitude for the amazing APFED community, individuals like you who fuel our mission every single day.
From powerful advocacy efforts to grassroots fundraising, your dedication has helped turn hope into action. Together, we’ve:
Celebrated key advocacy wins
Advanced awareness in countless new spaces
Reached critical fundraising milestones
Empowered patients and families through education and support
You’ve shared your personal story, contacted legislators, amplified our message on social media, volunteered at Eos Connection, or donated to sustain our work. You’ve made a lasting difference in so many ways:
Your lived experience has become a force for change.
Your support has helped train providers and educate newly diagnosed families.
Your actions have helped APFED build a future where eosinophil-associated diseases are better understood and better treated.
Because of you, APFED is more than an organization; it’s a movement.
From all of us at APFED, thank you for your time, your energy, and your unwavering commitment. You are the heart of everything we do, and we’re honored to continue this journey together.
Ever clicked through page after page, desperate for answers—but still without a diagnosis? You’re not the only one. That’s the powerful insight behind the new short film, End of the Internet, which follows one woman’s odyssey to uncover her eosinophil-associated disease diagnosis.
On average, patients wait nearly 5 years and consult more than seven specialists before receiving clarity.
This interactive piece, designed for healthcare providers, puts a face on the statistics and challenges medical professionals to recognize the journey, validate symptoms, and support patients faster.
Available at ENDOFTHEINTERNET.INFO, the film is free to stream and share, amplifying the reach of this vital message.
You can help make a difference:
Watch the film
Share it with your networks, especially providers
Tag your posts with: #diagnosticjourney #raredisease
Let’s ensure no one has to scroll “to the end of the internet” for the answers they deserve.
In a recent episode of Patient Advocacy Voices by Sanofi, APFED Executive Director Mary Jo Strobel joined hosts Eric Racine and Preeya George-Guiser to share how APFED is driving change for those living with eosinophil-associated diseases.
Strobel reflected on her personal journey into advocacy, which began with volunteer work and deepened after a family member’s diagnosis with eosinophilic esophagitis (EoE). She highlighted APFED’s grassroots origins and its evolution into a national organization with a mission to improve lives through education, research, and policy change.
The discussion explored APFED’s approach to turning awareness into action, from national campaigns like World EoE Day to targeted education efforts that support earlier diagnosis and better outcomes. A standout moment included the impact of a Times Square awareness billboard—where a passerby recognized their symptoms in real time.
Strobel emphasized that APFED’s strategy is driven by data and patient input. Initiatives like the Life with EoE report offer a blueprint for meeting real-world needs, while the organization’s policy and provider outreach are grounded in measurable insights.
As Strobel reflected on her leadership approach, she emphasized a guiding principle that shapes APFED’s work: “Keep the patient front and center of everything.” Whether it is awareness, policy, or research, every decision, she said, must come back to what best serves the community.
Listen to the Full Episode “Building Awareness, Driving Change: Inside APFED’s Strategy for Rare Disease Advocacy”
Available now on: Patient Advocacy Voices, Apple Podcasts, Spotify, and More
Eos Connection 2025 Offers In-Person and Virtual Access to Education, Support, and Community
Raleigh-Durham, NC – The American Partnership for Eosinophilic Disorders (APFED) is proud to announce Eos Connection 2025, its flagship patient education conference, is taking place June 26–28, 2025, in Raleigh-Durham, NC, and virtually.
The three-day event will unite patients, caregivers, healthcare professionals, and researchers to share the latest insights on eosinophil-associated diseases. Attendees will benefit from expert-led presentations, patient and caregiver panels, and opportunities to connect and engage with the broader community.
The conference will feature a dedicated teen program and family-friendly activities to create a welcoming environment for all ages. Brady Allen, quarterback for the University of Louisville Cardinals football team, will be onsite for a special meet-and-greet and will spend time with kids, sharing his personal experiences with eosinophilic gastrointestinal disease.
“Eos Connection is more than a conference—it’s a space where families come together to learn, connect, and feel empowered,” said Mary Jo Strobel, Executive Director of APFED. “Whether newly diagnosed or managing an eosinophilic condition for years, participants will leave better informed and supported.”
The conference is held in collaboration with the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR), Duke GI, UNC School of Medicine, and Wake Forest University School of Medicine. APFED extends its gratitude to its Education Partners, including but not limited to Sanofi, Regeneron, AstraZeneca, and Takeda, for their generous support in helping to keep this event accessible.
Registration also includes access to a pre-conference webinar on June 12 at 12 p.m. ET, designed to help patients and caregivers better understand how improvement in eosinophilic esophagitis (EoE) is measured. In addition, registrants can attend an all-virtual Research Round-Up, taking place July 16–18, which will focus on other eosinophil-associated conditions such as hypereosinophilic syndromes, eosinophilic asthma, and others. The June conference will primarily focus on eosinophilic gastrointestinal diseases.
“We are delighted to be Presenting Sponsors of the 2025 Eos Connection Patient Conference,” said Piya Sircar, U.S. Head of Rhinology, Gastroenterology, & Allergy at Sanofi. “This annual event offers vital education and support to patients and families wherever they may be in their disease journey. We thank APFED for their steady commitment to providing much needed education, offering patient resources, and building a welcoming community for those suffering from eosinophil-associated disorders.”
“APFED’s Eos Connection is a unique opportunity for patients and families to learn from leading experts and connect with others who share their experience,” added Dr. Amr Radwan, Executive Medical Director for Medical Affairs at Regeneron. “We’re honored to support APFED’s mission to bring awareness, education, and hope to the EoE community.”
Registration for onsite or virtual registration is now open at apfed.org/conference.
About American Partnership for Eosinophilic Disorders (APFED)
Founded in 2001, the American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) nonprofit organization that assists and supports patients and families affected by eosinophil-associated disorders, by providing education, creating awareness, supporting research, and promoting advocacy. To learn more, visit apfed.org.
Digestive Disease Week (DDW) 2025, held in San Diego, showcased significant advancements in the understanding and treatment of eosinophilic gastrointestinal diseases (EGIDs), with many sessions focused on eosinophilic esophagitis (EoE).
The conference highlighted the growing recognition of mast cells’ role in EoE pathogenesis (how a disease starts and develops), suggesting new therapeutic targets beyond eosinophils. There was also an emphasis on patient-centered care, including less invasive diagnostic methods and personalized treatment plans, to improve quality of life for those with EGIDs.
Session Highlights
Ikuo Hirano Eosinophilic Gastrointestinal Diseases Symposium. A special session named in honor of the late Dr. Ikuo Hirano was held on May 3. Despite progress in understanding and treating EoE, some aspects of care remain debated, like whether allergy testing should be done routinely, how often endoscopies are needed to monitor the disease, and what treatments should be started first. This session aimed to review the latest research and explore different approaches to these important clinical decisions.
Eosinophilic Esophagitis: Swallowing Made Simple. A session titled “Eosinophilic Esophagitis: Swallowing Made Simple” focused on practical approaches doctors can take to manage EoE. It covered topics such as diet changes, medications, and medical procedures to help make swallowing easier and improve health for people with EoE.
Research Highlights
Barzolvolimab Shows Promise in EoE Treatment. Histology data from the Phase 2 “EvolvE” study of barzolvolimab in treating EoE was presented. Barzolvolimab is biologic that depletes mast cells. Biopsies showed that people with EoE had a lot of mast cells in their tissue, and these numbers matched up with how many eosinophils they had. The findings support the potential therapeutic benefit of barzolvolimab in EoE.
Dupilumab Shows Promising, Sustained Benefits for Eosinophilic Gastritis. Results of CEGIR’s DEGAS study were presented at DDW 2025, showing that dupilumab, a biologic therapy, significantly improved gastric eosinophil counts as well as histopathologic, endoscopic, and transcriptomic outcomes in adults and adolescents with eosinophilic gastritis (EoG) compared to placebo. These improvements were seen by Week 12 and sustained or enhanced through Week 36, supporting dupilumab’s potential as an effective treatment for EoG and suggesting its benefits may extend beyond EoE to other eosinophilic gastrointestinal diseases.
Abstract Awards
APFED & AAFA Poster Receives Award. Two poster abstracts related to the Life with EoE report were accepted for presentation at DDW.
The first poster was awarded as a “Poster of Distinction.” An average of 4,500 abstracts are submitted to DDW each year, and only 10% are recognized with this award.
2025 AGA-APFED Abstract Award in Eosinophilic GI Diseases
The AGA-APFED Abstract Award in Eosinophilic Gastrointestinal Diseases is a collaborative initiative between the American Gastroenterological Association (AGA) and APFED. This award recognizes outstanding research abstracts in the field of EGIDs presented at DDW. Recipients receive a small monetary award to offset travel expenses, enabling them to share their findings with the medical community. These awards are made possible by APFED donors. Congratulations to the 2025 recipients:
Maya Kota, Northwestern University Feinberg School of Medicine, Chicago, IL
Abstract Title: Validation Of The Eosinophilic Esophagitis Endoscopic Reference Score As A Predictor Of Disease Outcomes: Thinking Beyond Eosinophils
This study looked at how helpful a tool called the EREFS score is for predicting problems in people with EoE. The EREFS score is a system doctors use during an endoscopy to look at and grade how the esophagus appears inside.
The researchers reviewed medical records from 350 adults with EoE who had endoscopies. They wanted to see if the EREFS score could predict serious problems—like food getting stuck, needing the esophagus stretched (dilation), or going to the ER because of EoE—within one year.
They found that:
Higher total EREFS scores were linked to more problems.
The fibrostenotic sub-score (which looks at narrowing and stiffness) and the presence of strictures (tight areas) were especially good at predicting issues.
The inflammatory sub-score had only a small link to complications.
This study shows that the EREFS score could be a useful way to tell which patients are more likely to have trouble and may help doctors better track how EoE treatments are working in future research.
Angelica Rae Lackey, University of North Carolina
Abstract Title: Increasing social vulnerability impacts EoE presentation and decreases treatment response in eosinophilic esophagitis
This study looked at whether a person’s social vulnerability—a measure based on things like income, education, housing, and access to transportation—impacts their experience with EoE. Researchers used data from over 1,400 patients newly diagnosed with EoE at UNC and linked their zip codes to the Social Vulnerability Index (SVI), a scale from 0 to 1 (with 1 meaning the highest vulnerability).
This study found that:
People with higher social vulnerability often had delays in getting diagnosed.
They were more likely to show symptoms like vomiting, nausea, and stomach pain.
For those treated with swallowed steroid medicine (called topical corticosteroids), people with higher vulnerability were less likely to show improvement when their esophagus was rechecked.
This difference stayed even after considering other factors like age, race, and type of insurance.
However, this pattern wasn’t seen in people who used diet changes as treatment.
This study suggests that people who face more social or economic challenges may not respond as well to certain EoE treatments—possibly due to issues like stress, treatment access, or follow-through. More research is needed to understand why this happens and how to better support patients.
Tursun Turapov, University of Utah
Abtract Title: Gastrointestinal Tract Mucosal Eosinophils In Healthy Adults
Researchers wanted to figure out what “normal” eosinophil levels look like in healthy adults. They asked 25 volunteers with no GI symptoms to undergo scopes of both their upper and lower digestive tracts. Biopsies were taken from many different areas, including the esophagus, stomach, small intestine, and colon.
Researchers found that:
Eosinophil levels varied widely depending on the location.
Very few eosinophils were found in the esophagus and rectum.
The small intestine and parts of the colon had the highest numbers.
Eosinophils were spread out evenly in the tissue and did not form clusters.
Understanding what is typical is key to developing better tests and treatment for EGIDs.
Barriers To Gastroenterology Referrals In Eosinophilic Esophagitis (EoE) Poster. Co-authors Hannah Jaffe from AAFA (left) and Mary Jo Strobel from APFED.
Poster of Distinction
“Women of EGID” gathered for lunch in San Diego
Dr. Reznikov, a gastroenterology specialist at Seattle Children’s Hospital, shows support for Eosinophilic Esophagitis (EoE) awareness in front of APFED’s public service ad, displayed at a San Diego bus shelter. This ad is one of several appearing across the city during May to raise awareness of EoE. Seattle Children’s will be launching a multidisciplinary EGID clinic this summer.
Preeya George-Guiser (Sanofi)
Ashley Calabrese (Takeda)
The AGA honored Dr. Evan Dellon with the William Beaumont Prize in Gastroenterology for his significant contributions to advancing EoE patient care through clinical and translational research. Dr. Dellon will be presenting at APFED’s patient conference this June.
Dr. Shauna Shroeder at Phoenix Children’s Hospital prepares to give a short talk for attendees in the exhibit hall.
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