Tag Archives: awareness

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.

 

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.

 

APFED Honors World Eosinophilic Diseases Day, May 18, 2023

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Atlanta, GA (May 18, 2023) – The American Partnership for Eosinophilic Disorders (APFED) is celebrating  the 2nd annual World Eosinophilic Diseases Day May 18, 2023, to increase global awareness of these conditions.

Eosinophils are a type of blood cell that have a role in immune system responses to medical conditions such as infections, inflammation, and allergies, to name a few. If a person has too many eosinophils without another known cause, it may be because of an eosinophil-associated disease.

The diagnosis depends on where in the body the eosinophils are found, including the gastrointestinal tract, heart, sinuses, blood, lungs, bladder, connective tissue. Symptoms may include, but are not limited to, trouble swallowing, food getting stuck in throat, stomach pain, loss of appetite or weight loss, nausea and/or vomiting, diarrhea, chest pain, and wheezing.

Eosinophil-associated diseases are chronic conditions that require ongoing medical care. The symptoms and day-to-day management of these conditions may significantly impact quality of life. The conditions affect both adults and children.

“Eosinophilic diseases affect people around the globe,” said Mary Jo Strobel, APFED’s Executive Director. “By uniting with patient advocates around the world, we can speak with a unified voice, calling attention to the myriad of symptoms patients experience. Elevating awareness of these conditions can help reduce diagnostic delays and lead patients to treatments faster.”

This year, in celebration of World Eosinophilic Diseases Day, APFED announced new resources, including:

 

  • A podcast episode (number 023) featuring Dr. Florence Roufosse, President of the International Eosinophil Society, who discussed global unmet needs for eosinophilic diseases.
  • A multicomponent cross-sectional needs assessment study for EoE in the US. APFED collaborated on this study which aimed to understand the patient journey for EoE as well as health care providers’ awareness of and practice around EoE. The summary is available in a report called Life with EoE: The Patient Experience and Opportunities to Improve Care in the U.S.
  • A plain language summary of a landmark patient charter for eosinophil-associated diseases, which was the outcome of a global collaboration. The summary was published in the journal Immunotherapy.

 

To learn more about eosinophil-associated diseases, visit apfed.org.

 

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.