All posts by Mary Jo Strobel

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

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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

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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)

 

 

APFED Partners with “Viewpoint with Dennis Quaid” to Spotlight EoE in Nationwide TV Segment

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FOR IMMEDIATE RELEASE

APFED Partners with Viewpoint with Dennis Quaid to Spotlight Eosinophilic Esophagitis (EoE) in Nationwide TV Segment

Atlanta, GA – January 7, 2025 – The American Partnership for Eosinophilic Disorders (APFED) is thrilled to announce its collaboration with Viewpoint with Dennis Quaid, a trusted platform for thought-provoking discussions and educational content. Together, APFED and Viewpoint will bring national attention to eosinophilic esophagitis (EoE), a chronic immune condition affecting the esophagus.

This full segment explores EoE, shedding light on the experiences of those living with this complex condition. Through this initiative, APFED aims to raise awareness, encourage viewers to recognize symptoms in themselves or loved ones, and inspire meaningful conversations with healthcare providers.

APFED is dedicated to improving the lives of individuals affected by eosinophil-associated diseases through education, advocacy, support, and research. The segment underscores the importance of a collaborative, informed community in driving innovation and improving outcomes for patients.

The national airing of clips from the documentary begin January 8, 2025, on Fox Business Network during primetime (estimated airtime 6:30pmET, but could vary by an hour). Additional broadcasts will follow on major networks, including CNN, MSNBC, CNBC, Discovery Life, Family Channel, and CNN Headline News, with availability throughout the year.

“We are excited to collaborate with Viewpoint with Dennis Quaid to bring EoE into focus,” said APFED Executive Director Mary Jo Strobel. “This partnership represents an incredible opportunity to educate the public, support the EoE community, and advocate for early diagnosis and effective care.”

The full documentary may be viewed online at https://www.viewpointproject.com/features-apfed/.

Funding for this campaign was made available thanks to a grant from Sanofi and Regeneron. For more information about APFED and its mission, visit www.apfed.org.

About APFED
The American Partnership for Eosinophilic Disorders (APFED) is a nonprofit organization that supports families affected by eosinophil-associated diseases. APFED works to educate, advocate, and fund innovative research to improve the lives of those with these chronic conditions.