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Highlights from AAAAI Annual Meeting
The 2014 Annual Meeting of the American Academy of Allergy, Asthma & Immunology (AAAAI) was a huge success! Highlights from this premier event in the world of allergy included working on consensus guidelines, a sold-out session to educate physicians about FPIES, and exciting partnerships with other patient advocacy organizations.
As pictured, AAAAI was an exciting opportunity for our task force to gather and continue developing the first consensus guidelines for FPIES! The guidelines will provide a course of action for diagnostic and treatment protocols, research needs, and daily management of the condition. Our team consists of IAFFPE's medical advisory board and other leading FPIES researchers from around the world. We thank all of them for their dedication throughout this process and their passion for helping FPIES patients!
In addition, IAFFPE Founder and Chair Fallon Schultz presented a poster with Dr. Matthew Greenhawt on "Clinical Features, Diagnosis, Management and Natural History of Food Protein-Induced Enterocolitis Syndrome in a National Cohort" (download the pdf here). Thanks to everyone who participated in the online survey that made this new research possible! Fallon also gave a speech on "Bridging the Gap: Gaps in the World of Food Protein Enterocolitis,” highlighting the challenges our FPIES community faces as well as IAFFPE's mission and initiatives.
And countless physicians stopped by the IAFFPE booth to ask questions, learn the latest FPIES news, receive handouts, and share their experience with FPIES patients. Overall, we were encouraged by how much interest in and knowledge of FPIES has grown in the three years IAFFPE has attended this conference.
IAFFPE to Award Travel Grant for FPIES Education Conference
IAFFPE is excited to announce a $500 travel grant to send the parent(s) of a child with FPIES to attend the 2013 FPIES Education Conference in Philadelphia, PA on October 20th.
Click here to learn more and apply.
1st Annual FPIES Education Conference
Presented by IAFFPE
October 20, 2013
Children's Hospital of Philadelphia
The 2013 FPIES Education Conference will offer unique educational and networking opportunities for parents and caregivers living with Food Protein-Induced Enterocolitis Syndrome (FPIES). The conference program includes a full day of presentations led by the top experts in the field. The goal of the conference is to provide insightful, meaningful educational and research-related information in a supportive environment for the FPIES community.
To register or learn more, please visit our main conference page: http://www.rsvpbook.com/fpiesconference
FPIES and IAFFPE Featured in ABCNews Article
A new ABCNews article highlighted FPIES as a rare and often misunderstood food allergy. The piece features IAFFPE Founder Fallon Schultz and our medical adviser Dr. Anna Nowak-Wegrzyn of Mt. Sinai's Jaffe Food Allergy Institute. It emphasizes that a non-IgE allergy like FPIES is difficult to diagnose and treat and underscores the need to raise awareness of the condition amongst pediatricians, ER staff and allergists. "We don't have good data about the prevalence of these disorders and studies can be very expensive since there is not an easy test," said Nowak-Wegzren. "Because these allergies are so elusive, pediatricians don't know about them. We are trying to raise awareness." http://abcnews.go.com/Health/weird-food-allergy-stresses-moms-baffles-doctors/t/story?id=18843611
May 2013 Food Allergy Awareness Week
(Click on the following images to download your FPIES Coloring Sheets and show us your teal and gray pride!)
IAFFPE is honored to participate in the 2013 Food Allergy Awareness Week from May 12-18th, highlighting the awareness of Food Protein-Induced Enterocolitis Syndrome (FPIES). Our supporters can join in the effort to educate and empower on our interactive social media sites, where they can access new information, helpful handouts and videos, and share in the camaraderie.
You can also raise awareness of Food Allergy Week on your social media pages. Color your teal and gray awareness ribbon coloring sheet and post a photo to your page. Ask your family and friends to join in and participate to create support and awareness of FPIES. Visit us on Facebook as we countdown to Food Allergy Awareness Week. http://www.foodallergy.org/food-allergy-awareness-week
Rare Disease Day 2013
IAFFPE's Amity Westcott-Chavez at a Rare Disease Day event in Sacramento
IAFFPE was thrilled to participate in Rare Disease Day 2013 on February 28th. Rare Disease Day brings awareness to the thousands of rare conditions that need hope and recognition, including FPIES. We honored the day by unveiling a new video segment on the fact vs. fiction of FPIES, featuring Dr. Anna Nowak-Wegrzyn, an FPIES expert from the Jaffe Food Allergy Institute at Mount Sinai. Click here to view the video: http://m.youtube.com/watch?v=hsdN9aBk9KU&feature=plcp.
In addition, IAFFPE's Amity Westcott-Chavez represented the FPIES community at a Rare Disease Day event at the California State Capitol. Her presentation highlighted the need for education, awareness and advocacy of FPIES.
2013 Annual Meeting of the American Academy of Allergy, Asthma & Immunology (AAAAI)
Fallon Schultz and Amy Barber at AAAAI
IAFFPE was honored to represent Food Protein-Induced Enterocolitis Syndrome (FPIES) as an exhibitor at the 2013 AAAAI Annual Meeting in San Antonio, TX from February 23-26. This conference is the world’s premier gathering of over 7,000 allergy and immunology experts and represents an exciting opportunity for IAFFPE to educate and advocate for FPIES patients worldwide. In addition to exhibiting, we met with AAAAI Board of Directors and Lay Organizations to voice the needs of FPIES families; the Board pledged it's full support for IAFFPE's efforts!
We also attended a National Institutes of Health (NIH) meeting where IAFFPE medical advisors expressed the dire need for more research and funding to better define the mechanisms of FPIES and create formal diagnostic and treatment guidelines. In addition, FPIES was a main topic of interest at AAAAI's Adverse Reactions to Foods Committee. International physicians supported broadening FPIES education to more medical and frontline providers.
We also congratulate Dr. Anna Nowak-Wegzryn (a member of our Medical Advisory Board) on being named Chair of the Adverse Reactions to Foods Committee for 2014. http://annualmeeting.aaaai.org
Fiocchi, Greenhawt, and Lightdale Join Medical Advisory Board
We’re thrilled to announce the addition of the following new members to the IAFFPE Medical Advisory Board. The IAFFPE remains committed to bridging the gap between patient, family and physician by collaborating with the leaders in FPIES research and clinical practice.
Alessandro Fiocchi, MD
Chair, Special Committee on Food Allergy World Allergy Organization
Matthew Jason Greenhawt, M.D., M.B.A. Assistant Professor and Research Director Department of Allergy & Immunology University of Michigan, Ann Arbor, MI
Jennifer Lightdale, MD, MPH
Director, Patient Safety and Quality, Division of GI/Nutrition Boston Children’s Hospital, Boston, MA
FPIES Community Joins Together for ICD-10 Support Effort
In the coming months, we will learn the outcome of our ICD-10 initiative. Thanks to the tremendous efforts of our community, the CDC’s National Center for Health Statistics (NCHS) received more than 300 letters in support of a new ICD-10 code for FPIES. We will find out if the code passed any time between now and June!
2012 Annual Meeting of the American College of Allergy, Asthma & Immunology (ACAAI)
Amy Barber, Dr. Helen Chan of Hong Kong, Fallon Schultz, Lisa Woodward, and Dr. Sami Bahna (IAFFPE Medical Advisor) at ACAAI
IAFFPE was proud to be an exhibitor at the 2012 Annual Meeting of the American College of Allergy, Asthma and Immunology (ACAAI) on November 8–13 in Anaheim, California. A wide array of physicians and health professionals stopped by our booth to learn more about IAFFPE and FPIES.
In addition, we were excited to attend a special session of the International Food Allergy Conference, which featured an FPIES segment led by Dr. Jonathan Spergel, MD, PhD, the Chair of our Medical Advisory Board.
IAFFPE Becomes AAAAI Lay Organization
We are honored to have been selected as a lay organization with the American Academy of Allergy, Asthma & Immunology (AAAAI). AAAAI partners with a select group of patient advocacy organizations that have a shared concern for those with allergic and immunologic conditions and their families. As a lay organization, IAFFPE will collaborate with AAAAI on various projects as needs and opportunities arise. For more information on AAAAI's initiatives and to learn about other lay organizations, please visit: www.aaaai.org.