All posts by Mary Jo Strobel

APFED to Honor World EoE Day, May 22

Announcements, Press Releases, What's New, , ,

On May 22, 2025, the global community will recognize the first-ever World Eosinophilic Esophagitis (EoE) Day—a significant milestone in raising awareness about this chronic and often misunderstood condition.

Eosinophilic esophagitis (EoE) is a chronic disease in which eosinophils (a type of white blood cell) build up in the esophagus, leading to inflammation, difficulty swallowing, and other complications. EoE can significantly impact a patient’s quality of life, especially when left undiagnosed or untreated.

Despite its increasing prevalence, EoE remains underdiagnosed and frequently misunderstood, leading to delayed treatment for many patients. World EoE Day aims to bridge this gap by raising public awareness of symptoms and encouraging healthcare consultation, and advocating for better care and treatment.

World EoE Day is spearheaded by the EoE Day Alliance, a partnership of patient organizations dedicated to improving awareness and support for those affected by EoE. Members of the alliance include:

  • AEDESEO – Asociación de Pacientes con Déficit de Eosinófilos y Síndrome Eosinofílico de Origen Desconocido (Spain)
  • APFED – American Partnership for Eosinophilic Disorders (USA)
  • ausEE Inc. – An organization dedicated to supporting those affected by eosinophilic diseases (Australia)
  • ESEO Italia – Associazione di famiglie contro l’esofagite eosinofila e le patologie gastrointestinali eosinofile (Italy)
  • FAACT – Food Allergy & Anaphylaxis Connection Team (USA)
  • GAAPP – Global Allergy and Airways Patient Platform (Austria)
  • Nacionalno udruženje EOE – Više od alergije (Serbia)

“Raising awareness about eosinophilic esophagitis is critical to ensuring early diagnosis and access to appropriate care,” said APFED Executive Director Mary Jo Strobel in a press release issued by GAAPP on behalf of the Alliance. “Too many patients endure years of symptoms before receiving answers. By increasing understanding among healthcare providers and the public, we can reduce delays in recognition and diagnostics, improve outcomes, and enhance the quality of life for those affected by this chronic condition.”

In the coming weeks, the EoE Day Alliance will be developing resources in a variety of languages to be made freely available to all those wishing to join our efforts to raise global awareness of EoE. We’ll post related announcements regarding the availability of new resources to this website (apfed.org) and to APFED’s social media channels when they are available.

World EoE Day will take during National Eosinophil Awareness Week this year, as will World Eosinophilic Diseases Day, which is honored annually on May 18.

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  • Could it Be EoE? If you suspect you or a loved one might have EoE, we encourage you to download this guide and speak to a healthcare provider about symptoms you are experiencing.

 

Rare Disease Day, February 28, 2025

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Every year, on the last day of February, the world comes together to recognize Rare Disease Day—a global initiative dedicated to raising awareness for rare diseases and the millions of people affected by them.

While individual rare diseases may affect only a small percentage of the population, collectively, rare diseases impact an estimated 300 million people worldwide.

Rare Disease Day® serves as a platform for advocacy, education, and community-building.

Join APFED as we shine the light on life with rare diseases. To help celebrate the day, consider getting involved in one or more of these activities.

  • Explore digital downloads available from the Rare Disease Day® website. These include social media graphics, banners, printable posters and much more.
  • Show your stripes! The zebra is the official symbol of rare diseases, as it represents the uniqueness of these conditions. On Rare Disease Day®, people around the world wear stripes to show solidarity.
  • Share personal stories of your experience with rare diseases. If you use social media as a platform to share, use hashtags like #RareDiseaseDay and #ShowYourStripes to join the conversation.
  • Participate in a virtual or in-person event taking place near you. The Rare Disease Day® website maintains a list of events and special light-ups taking place around the globe.
  • Advocate for policy change.
    • Participate in advocacy initiatives that APFED is supporting, such as urging lawmakers to support medical research and urging specific states to protect Section 504 of the Americans with Disabilities Act of 1973. Learn more here.
    • Sign the National Rare Disease Community Petition and share it. This petition was created to urge lawmakers to prioritize rare disease policies. The petition closes at the end of the day on Thursday. Everylife Foundation will send it to members of Congress on Friday, February 28.
      https://everylifefoundation.org/national-rare-disease-community-petition/

For more information about Rare Disease Day® visit rarediseaseday.org.

 

New Platform Launched to Help Patients and Providers Navigate Medical Care for Eosinophil-Associated Diseases

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Feb 21, 2025 – The American Partnership for Eosinophilic Disorders (APFED) is proud to announce the launch of EosCare (NavigateEosCare.org), a new digital resource designed to assist patients, caregivers, and healthcare providers in navigating clinical care for eosinophil-associated diseases.

This comprehensive digital toolkit was developed collaboratively by the American Partnership for Eosinophilic Disorders (APFED) and Healing Hugs Haven to empower individuals living with eosinophil-associated diseases, as well as their caregivers, by providing guidance on effectively navigating healthcare systems and advocating for optimal care.

Key Features of EosCare:

  • Understanding Healthcare Rights: Teaches patients how to more confidently exercise their healthcare rights.
  • Exploring Healthcare Delivery Models: Insights to help people make informed decisions about their care options.
  • Navigating Health Insurance: Information about models of healthcare delivery and key terms.
  • Advocacy and Care Coordination: Strategies for building an effective care team, participating in shared decision-making, and transitioning from pediatric to adult care.
  • Optimizing Clinical Visits: Tips for selecting the right doctor, preparing for appointments, effective communication, and follow-up care.

EosCare is tailored for a diverse audience at any stage of their diagnostic or treatment journey, aiming to build confidence and competence in managing eosinophil-associated diseases.

The development of this toolkit was made possible through educational grants from Abbott, Bristol-Myers Squibb, Sanofi, and Regeneron.

For more information about the organizations involved with this collaboration, visit APFED’s website at apfed.org and Healing Hugs Haven at healinghugshaven.com.

About APFED

Founded in 2001, the American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.
www.apfed.org

Recognizing the Signs and Symptoms of EoE

Education, What's New

Living with a chronic condition can be challenging, especially when it often goes undiagnosed. Eosinophilic esophagitis (EoE) is one such condition, affecting numerous people who might not even be aware of it. To help bridge this knowledge gap, we’ve partnered with global advocacy groups in the EoE community to create a comprehensive guide aimed at identifying and understanding EoE.

Our aim is to facilitate meaningful conversations between patients and healthcare providers, ensuring timely and accurate access to treatment for better outcomes.

If you suspect you might have EoE, we encourage you to download this guide and speak to a healthcare provider about symptoms you are experiencing. We also encourage people in our community to share this material and help spread awareness of EoE.

Download the PDF here.

CouldItBeEoE_APFEDQR

Wildfire Resources for Asthmatics

APFED Blog, What's New, ,

Wildfires bring unique challenges for people with asthma, including eosinophilic asthma, as smoke and poor air quality can worsen symptoms and trigger asthma attacks. Below are resources that may help those affected navigate these difficulties. While not comprehensive, we hope this list provides useful guidance.

 

General Resources

 

California State Resources (LA Fires 2025)

 

California Resources and Guidance For Schools (LA Fires 2025)