(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) is hosting its 15th Annual Patient Education Conference on Eosinophilic Gastrointestinal Disorders (EGIDs) this week in Greenville, SC on July 7-8.  The conference is a unique opportunity for patients, families, caregivers, advocates, and experts from across the United States to exchange knowledge, experiences, needs, and perspectives.

Held at the Hyatt Regency Downtown, Eos Connection will provide a patient-tailored program that highlights important information in the clinical and research areas. This year’s conference will feature roughly 25 educational and experiential sessions designed specifically for the Eos community, from recently-diagnosed patients to veterans of EGID management. The agenda will also include programs for children and teens.

Eosinophil-associated diseases (EADs) are chronic inflammatory disorders characterized by above normal amounts of eosinophils (a type of white blood cell) in one or more specific places in the digestive system, tissues, organs, and/or bloodstream, which causes inflammation and damage. The most common of these diseases are EGIDS, which affect the gastrointestinal tract and often render the patient unable to tolerate certain food proteins. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. Those that suffer from EADs often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made.

Eos Connection attendees will learn the latest advancements in the diagnosis and treatment of EGIDS, as well as promising research on the horizon. In addition, attendees will get practical tools to implement in the daily management of EGIDs, as well as strategies to help cope with the physical and emotional challenges of living with EGIDs.

The conference is also a time for individuals and families to meet and build a support network with others who are managing these diseases. Social activities will include APFED’s HOPE on the Horizon Walk on July 7 to raise funds for EGIDs research.

“APFED hosts this conference with the goal of providing our community of patients and families with education and resources to help effectively navigate EGIDs at any stage,” said APFED Executive Director Mary Jo Strobel. “We are grateful to an outstanding lineup of speakers who lend their time and expertise. This conference is celebrating its 15^th year, and that would not be possible without an inspiring community that year after year shares its challenges, solutions, successes, and hope for the future.”

For those who cannot attend the conference onsite in Greenville, APFED offers a virtual registration option. On Saturday, July 8, virtual attendees may participate online via webcast in the conference’s general session and submit questions for conference speakers.

Eos Connection 2017 is made possible thanks to the generous support of APFED’s Education Partners, including Presenting Partner EleCare®.

Learn more about the conference and ways to register at apfed.org.

About American Partnership for Eosinophilic Disorders (APFED)

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

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Eosinophil-associated diseases community bands together for awareness and action

(ATLANTA, GA)—This week (May 14-20, 2017), the American Partnership for Eosinophilic Disorders (APFED) celebrates the 10th Annual National Eosinophil Awareness Week (NEAW). NEAW was established in 2007 by APFED, a nonprofit patient advocacy organization, to support those who have eosinophil-associated diseases (EADs) and to raise the level of education and awareness in the public and the medical community about these conditions.

Imagine having a rare disease the most people cannot pronounce and that many doctors have not seen or do not understand. You travel from doctor to doctor looking for answers, only to find that once you have a diagnosis, treatments are few. This is the reality for people who suffer from an eosinophil (ee–oh–sin–oh–fil) associated disease, a group of rare diseases caused by a white blood cell called the eosinophil.

EADs can cause disease in many different organs and can present differently depending on the type involved. Those that suffer often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. There is no cure and no FDA-approved treatments for most subsets of EAD.

In honor of NEAW, members of the EAD community have joined together with APFED to develop an action-oriented social media campaign called READ for EAD: Rally Around Eosinophil Associated Diseases. The campaign is designed to inspire, educate, and remind patients that they are not alone. During NEAW, participants will dedicate words of inspiration to a loved one and share on social media using the hashtag #READ4EAD, and challenge their friends and family members to participate and/or make a donation to APFED.

“We are inspired every day by amazing individuals with EADs and their families,” said APFED Executive Director Mary Jo Strobel. “We know these READ for EAD contributions will help further strengthen the EAD community, offering not only inspiration but also a reminder that there are others out there who know the unique challenges of life with an EAD. It’s a fun, easy, and meaningful way to spread awareness far and wide.”

Organizations, healthcare providers, and institutions around the globe are joining APFED to recognize National Eosinophil Awareness Week by sharing information with their communities and with the public. Nutricia, the makers of Neocate®, a line of amino acid-based products, has partnered with APFED for its celebration of this special week by providing the means for the organization to distribute educational packets to health care providers and awareness materials to the public.

“By taking action and educating others during NEAW, we can provide hope to patients and families living with these diseases, and change the future,” shares APFED’s President Dr. Wendy Book. “This week is a special time that joins the research community, health care providers, caregivers, and people living with EADs together to heighten awareness and continue to advance these conditions through education, research, and advocacy.”

Visit apfed.org to learn more about eosinophil-associated diseases, current research efforts, and community events that are taking place during National Eosinophil Awareness Week.

Organizations, Groups, and Healthcare Providers Joining APFED in Celebrating NEAW:  Akron Children’s Hospital; Alabama Eosinophilic Disorders Support Group; American Partnership for Eosinophilic Disorders; ausEE (Australia); Center to Advance Palliative Care; Cincinnati Center for Eosinophilic Disorders; Families Affected by Eosinophilic Disorders (UK); Greenville Spartanburg Eos Support Group; Kids with Food Allergies (KFA); International Foundation for Functional Gastrointestinal Disorders (IFFGD); National Eosinophilia Myalgia Syndrome Network (NEMSN); New York Metro Eos Support Group; Utah Food Allergy Network Division of Eosinophilic Support. Learn more about what our partners are doing to recognize NEAW 2017.

About American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose 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. To learn more about APFED and eosinophil-associated diseases, visit apfed.org.

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Funding supports researchers who have novel approaches to understanding eosinophilic esophagitis

(ATLANTA, GA)—The American Partnership for Eosinophilic Disorders (APFED) is pleased to announce the award of two HOPE Pilot Grants in support of promising research projects studying eosinophilic esophagitis (EoE).

The first of two awardees receiving APFED’s 2017 HOPE Pilot Grant is John Garber, MD, Instructor in Medicine, Harvard Medical School; Division of Gastroenterology, Department of Medicine, Massachusetts General Hospital. Dr. Garber will receive $100,000 over a two-year period for his project entitled, “Determinants of Integrin Signaling in Eosinophilic Esophagitis.”

Dr. Garber’s team will be studying the interaction of select integrins relative to recruitment and activation of eosinophils in the esophagus. Gaining a better understanding of the mechanisms of eosinophil recruitment may lead to the development of treatments that stop the migration of eosinophils into the esophagus.

The second 2017 HOPE Pilot Grant was awarded to Aaron Kobernick, MD, MPH, Assistant Professor, Allergy and Immunology, University of Utah. Dr. Kobernick will receive $100,000 over a two-year period for his project entitled, “Detection of Eosinophilic Inflammation in Patients with Eosinophilic Esophagitis by Oral Administration of Tc-99m Heparin.”

This research focuses on finding a noninvasive way to detect and monitor EoE.  Dr. Kobernick’s team has developed a technique in which heparin labeled with a radioactive tracer can be used with a specialized camera to identify the presence of eosinophils in the esophagus. The aim of his research will be to assess the lowest amount of radioactivity that can be used to evaluate inflammation caused by esophageal eosinophilia.

This research shows great promise as a potential noninvasive method for doctors to use to evaluate whether a particular treatment method (e.g., dietary therapy, corticosteroids) is effective for a patient.

“The grant cycle was very competitive for this year’s HOPE on the Horizon Research Program,” said APFED Executive Director Mary Jo Strobel. “We are grateful for the generous donors who recognize the importance of investing in research that enables better quality of care and life for those with eosinophil-associated diseases. Their contributions enabled two awards this year, and we are excited to support this research.”

“We are so pleased that the Charit-EoE Concert for a Cure was able to assist in raising the funds to support these invaluable research grants to help us better understand EoE,” said Arlene and Lance Steinberg, organizers of the November fundraising event in New York City that benefited APFED’s HOPE Program. “The generous support of family, friends and many business associates helped further the quest for better therapies and ultimately a cure.”

APFED’s HOPE on the Horizon Research Program  launched in 2005 and is supported entirely by donations.  Contributions to the fund have enabled the organization to direct more than $2 million in support of research initiatives.

The HOPE Pilot Research Grants are competitive and are selected through a peer-review process. Applications are accepted from investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases. Successful applications focus on the development of new ideas that are likely to lead to future external funding.

About American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose 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. To learn more about APFED and eosinophil-associated diseases, visit apfed.org.

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