All posts by Amity Westcott-Chavez

Eos Connection 2019: Why Attend?

APFED Blog, What's New

Join patients and families from across the country at APFED’s 17th Annual Patient Education Conference on eosinophil-associated diseases (EADs)! This year’s conference will be held July 25-27 in the Washington, DC area. We know you’ll be just as excited as we are about the program, expert speakers, and the opportunity to network and socialize with other families.

Many families plan vacations around annual APFED’s conference. Why? Because they know the knowledge and insights they’ll receive on eosinophil-associated diseases are unparalleled. Attendees also value the opportunity to meet others who walk a similar path, establish lasting friendships, and become inspired and motivated to live well with EADs.

Still not sure if the conference is right for you? Here are even more reasons to attend:

  1. Expertise: We’re bringing together the leading experts in EAD care and research for a powerful agenda  focused on the topics that matter most to you.
  2. Knowledge: Enrich your understanding of EADs and leave with new strategies and resources to manage your disease with confidence. You’ll also gain knowledge that empowers you to become a more effective advocate for your care or that of your child.
  3. Answers: You have questions, and the conference is your chance to get answers from the best minds in the field. You’ll have multiple Q&A opportunities during both general and breakout sessions.
  4. Location: The conference will be held at The DoubleTree by Hilton in the thriving urban community of Bethesda, home to a variety of attractions, parks, shops, and restaurants—with easy access to all that Washington DC has to offer!
  5. Personalization: Customize your conference experience by choosing from a variety of informative sessions tailored to where you or your child are on your EAD journey, as well as topics of interest in the practical management of EAD.
  6. Inspiration: What does the future hold for EAD research? How can families prepare for a transition from pediatric to adult care? What conditions overlap with EAD? We have sessions designed with you in mind! Our agenda was created for EAD families, by EAD families, full of valuable guidance that you can learn from immediately and implement into life at home.
  7. Self-care:Whether you want to learn how to establish and maintain appropriate care, discuss the emotional impact of living with an EAD, or discover ways to help advance research, we have sessions geared toward taking better care of yourself or your child.
  8. Hope: How far have we come with EAD research and where are investigators heading? You’ll get the inside scoop with special updates led by researchers from APFED’s Hope of the Horizon Fund and the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR). Leave with the hope that there are better days ahead!
  9. Connections:Want to connect with other patients and families who “get it.” This unique event brings our community together to share tips, advice and experiences. What works? What doesn’t? Expand your support network and find new ideas for practical management.
  10. Fun! In addition to our sessions, there are additional social opportunities  planned, including Family Fun Day at the National Museum of Natural History on July 25 and a Family-Friendly Social Mixer and Casino Night on July 27.

You can also join the Facebook group that was set up for attendees to meet one another, share conference information, and make plans to get together during this amazing weekend!

The deadline for early bird rates is June 27, so check out the details and  register today. We look forward to seeing you in Washington, DC!

Your Friends at APFED

P.S. Can’t join us in Washington, DC? Check out our virtual attendance option! Get the details and register.

National Eosinophil Awareness Week (May 19-25, 2019) Shines Spotlight on Chronic, Inflammatory Conditions

APFED Blog, Media Info, Press Releases, Uncategorized, What's New

Eosinophil-associated diseases community bands together for awareness and action

 (Atlanta, GA)— During National Eosinophil Awareness Week, May 19-25, the American Partnership for Eosinophilic Disorders (APFED) will shine a brighter spotlight on eosinophil-associated diseases and celebrate the brave and resilient men, women, and children who live day-to-day with the impact of these medical conditions.

Eosinophils (pronounced “ee-oh-sin-oh-fills”) are a type of white blood cell that helps our immune systems fight off infections and parasites. They also play a role in allergic reactions and inflammatory processes.

When a person has elevated numbers of eosinophils in their digestive system, tissues, organs, and/or bloodstream, without a known cause, he or she may have an eosinophil-associated disease.

These conditions are further characterized by the areas of the body in which the eosinophils have accumulated. A few examples include the esophagus (eosinophilic esophagitis), stomach (eosinophilic gastritis), or the bladder (eosinophilic cystitis).

Symptoms of eosinophil disease may vary depending on the area of the body affected, and by age. Patients 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. Most subsets of eosinophil-associated disease do not yet have an FDA-approved pharmaceutical indicated for treatment.

Officially recognized by the U.S. Congress in 2007 as the result of APFED-led efforts, National Eosinophil Awareness Week is a special time in which patients, caregivers, health care providers, and organizations increase efforts to raise public awareness about these conditions and what it means to be “eosinophilic.”

“During National Eosinophil Awareness Week, our community of patients and providers ramp up efforts to disseminate information so that the public is more aware of these conditions,” said APFED Executive Director Mary Jo Strobel. “Sharing our stories showcases the strength and resilience of our community members and offers hope to families who are affected, and by sharing educational information about these conditions and how they might manifest, it may encourage the undiagnosed struggling with symptoms to push for answers.”

APFED will be celebrating the “Eos” community during this special week by offering free digital educational resources and awareness imagery for social media, Facebook giveaways, and special engagement opportunities through their platforms. The organization will also be disseminating information to health care providers in effort to advance awareness and knowledge about these conditions and arm the medical community with materials to better educate their patients about eosinophil-associated diseases.

Nutricia, the makers of Neocate®, has partnered with APFED once again this year in celebration of National Eosinophil Awareness Week, and has provided the organization with the means to expand outreach to the patient and provider communities.

“At Nutricia, we are proud to partner with APFED to raise awareness to help support and educate the community about eosinophil-associated diseases,” said Nutricia’s Senior Brand Manager Sonal Patel.

Visit apfed.org to learn more about eosinophil-associated diseases and National Eosinophil Awareness Week, and to access a calendar of special events that will be taking place during Awareness Week.

About American Partnership for Eosinophilic Disorders (APFED)

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 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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New CEGIR Site Announced

Press Releases, What's New

Contacts:
Jennifer Knowles, University of Utah, Phone: (801)-587-9050, E-mail: Jennifer.Knowles@hsc.utah.edu  

Mary Jo Strobel, American Partnership for Eosinophilic Disorders, Phone: (713)-493-7749, Email: mjstrobel@apfed.org

PRESS RELEASE
For Immediate Release

(ATLANTA, GA)—The American Partnership of Eosinophilic Disorders (APFED) and University of Utah (U of U) are excited to announce that the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) has recently added the University of Utah in Salt Lake City, Utah as the newest CEGIR site.  The U of U is open to enroll patients (ages 3-100) into the CEGIR 7801 Study: OMEGA—A Prospective, Multicenter Study to Compare and Validate Endoscopic, Histologic, Molecular and Patient-Reported Outcomes in Pediatric and Adult Patients with Eosinophilic Esophagitis (EoE), Gastritis (EG) and Colitis (EC)*.

EoE, EG and EC are eosinophil-associated diseases (EADs).  EADs are chronic inflammatory disorders characterized by elevated levels of eosinophils (a type of white blood cell) in one or more specific places in tissues, organs, and/or bloodstream, which in turn causes inflammation and damage.  Specifically, EoE, EG and EC are Eosinophilic Gastrointestinal Diseases (EGIDs) which means that there are elevated levels of eosinophils in the gastrointestinal tract.

CEGIR is conducting the OMEGA study because they want to learn more about EGIDs.  As part of that goal, one area of study will compare how well a patient feels—their symptoms—with what the tissue samples look like under a microscope.  The study is designed to give researchers and clinicians a better idea of the correlation of symptoms to the tissue, help them find clues about the disease in the tissue samples and assess how this information could be used in the future to help guide diagnosis and treatment plans.

If you would like to learn more about the OMEGA study and see if you may be eligible to participate, please visit: https://www.rarediseasesnetwork.org/cms/cegir/7801 .  If you are interested in seeing if you can participate in this study at University of Utah in Salt Lake City, Utah please contact Jennifer Knowles using the phone number and/or e-mail address listed above.

*The OMEGA study is currently only enrolling patients with EG and/or EC and has been closed to EoE patients.  Patients with a diagnosis of Eosinophilic Gastroenteritis (EGE) or Eosinophilic Duodenitis (ED) can contact a study coordinator for additional eligibility details.

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About The American Partnership of Eosinophilic Disorders (APFED)

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. Learn more about APFED and our upcoming patient education conference held in collaboration with CEGIR and the Children’s Hospital of Philadelphia (July 25-27, 2019 in Washington, DC) at www.apfed.org

About University of Utah (U of U)

University of Utah Health is the Mountain West’s only academic health care system, combining excellence in patient care, the latest in medical research, and teaching to provide leading-edge medicine in a caring and personal setting. The system provides care for Utahns and residents of five surrounding states in a referral area encompassing more than 10 percent of the continental United States.

Whether it’s for routine care or highly specialized treatment in orthopedics, stroke, ophthalmology, cancer, radiology, fertility, cardiology, genetic-related diseases, organ transplant, or more than 200 other medical specialties, University of Utah Health offers the latest technology and advancements, including some services available nowhere else in the region.

As part of that system, University Hospitals & Clinics relies on more than 1,400 board-certified physicians and more than 5,000 health care professionals who staff four hospitals:

 

U of U Health also has 12 community clinics and several specialty centers, which include:

 

Consistently, ranked #1 in quality in the nation among academic medical centers, our academic partners at the University of Utah include a School of Medicine and Dentistry, and Colleges of Nursing, Pharmacy, and Health, which are internationally regarded research and teaching institutions.

 

About the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

CEGIR (U54AI117804) is a part of the NCATS Rare Diseases Clinical Research Network (RDCRN).  RDCRN is an initiative of the Office of Rare Diseases (ORDR), NCATS, funded through a collaboration between the NCATS, the NIAID and the NIDDK.  CEGIR is also supported by patient advocacy groups including APFED, CURED and EFC.  www.rdcrn.org/cegir

Applications Accepted for APFED Scholarship Honoring Haley Royko

Announcements, APFED Blog, What's New

APFED is now accepting applications for the Haley Royko Memorial Scholarship, established in memory of a remarkable community member who sadly passed away last year at a young age. To learn more and apply for this $1,000 college scholarship for the 2019-2020 school year, please visit: https://apfed.org/college-scholarship/. The deadline to apply is May 31, 2019.

Update on New ICD-10-CM Codes for Subsets of Eosinophilic Diseases

Announcements, APFED Blog, What's New

Over the past year, APFED and the International Eosinophil Society (IES) partnered to propose and jointly advocate for eight unique and distinct ICD-10-CM Codes for subsets of eosinophilic diseases and for four amendments to existing codes. In early March, APFED Board Member Kathleen Sable and IES President Dr. Bruce Bochner were invited to Baltimore, MD to present the justification for the new codes and amendments to members of the to the ICD Coordination and Maintenance Committee, co-chaired by the  National Center for Health Statistics and the Centers for Medicare and Medicaid Services.

New Codes Proposed

1.       Acute Eosinophilic Pneumonia

2.       Chronic Eosinophilic Pneumonia

3.       Eosinophilic Asthma

4.       Myeloid Hypereosinophilic Syndrome

5.       Lymphocytic Variant Hypereosinophilic Syndrome

6.       Idiopathic Hypereosinophilic Syndrome

7.       Episodic Angioedema with Eosinophilia, also known as Gleich’s Syndrome

8.       Drug Reaction with Eosinophilia and Systemic Symptoms (DRESS)

Amendments

·    Distinct code for Eosinophilic Gastritis

·    Distinct code for Eosinophilic Gastroenteritis

·    Eosinophilic Colitis, redefining which conditions can be coded as EC

·    Eosinophilic Granulomatosis with Polyangiitis (EGPA), updating existing code to include EGPA (new name), previously known as Churg-Strauss

The proposal for the new codes and the amendments was well received. Following a review period, a decision will be made on the proposed code changes.

The ICD-10-CM coding system is an international classification system that groups related disease and procedures for the purpose of reporting statistical information. These codes provide a uniform language and serve as an effective means for reliable nationwide communication among physicians, patients, and third parties. These codes are necessary for billing, insurance and medical records, and national statistics. Codes also have substantial benefits to the patient community, including promoting research into these diseases, new clinical trials, and successful insurance reimbursement for patients.

In 2008, APFED led efforts for the establishment of medical codes for eosinophilic gastrointestinal diseases, which greatly advanced research efforts and national health resource allocation in the U.S. for these diseases.