NJ/PA Eosinophilic Information provides news and direction toward resources for those dealing with Eosinophilic Esophagitis (EoE) and other Eosinophilic Gastrointestinal Disorders (EGID).
Please note our Links section for a list of Eosinophilic Treatment Centers around the country, organizations that assist the eosinophilic community, and links to information about food products that may be helpful with elimination diets.
Our Support page lists support groups that can be found online and around the U.S., as well as groups in Canada, the U.K. and Australia.
Our Advocacy section provides information that may be helpful if your child needs a 504 plan or an IEP in school.
Important New Advocacy Resources:
Just in time for the new 2012 school year, APFED now has very helpful videos/webinars available on their website as well as on YouTube and will be adding more in the near future. Some of the videos/webinars now include:
They now also have a specific section for School Advocacy, which includes resources prepared by an educational advocate in Georgia who has experience helping parents obtain necessary modifications and accommodations for their children with Eosinophilic-Associated Disorders (EoE / EGID):
take time to visit each of the above helpful advocacy
links if you are potentially in need of a 504 plan or IEP for your child with
EoE / EGID.
FAAN also has a new educational advocacy resource in the form of an Ask The Expert Q & A with Pet Wright of Wrightslaw.com. This web feature is only available to registered FAAN members at:
On June 22, 2012, the 2nd annual National EoE Summit was held at the Ritz-Carlton, Tysons Corner, in McLean, VA. It was an event specifically for physicians. It featured leaders in the field of Eosinophilic Disorders who discussed the latest developments.
You can watch a video of Dr. Wendy Book, current president of APFED, speaking at the summit on APFED’s YouTube channel.
Dr. Book spoke about the history of APFED and how awareness and understanding of eosinophilic disorders has evolved over the years, as well as the challenges facing parents and patients.
There is a new Facebook community to support elemental formula legislation in NJ & PA. There will be a new bill introduced to the NJ state legislature in March. Please stay up-to-date with what is needed to get it passed so you can contact your assemblymen/women and state senators, asking for their support when the time comes. Info will be posted at
Update: Assemblymen John Amodeo (R) and Chris Brown (R) will reintroduce A-3830, which, if passed, would mandate health insurance coverage for certain amino acid-based elemental formulas for eosinophilic disorders. Both welcome other assembly members to join them in sponsoring the bill. Assemblyman Dan Benson (D) has already expressed a desire to do so.
Other assembly members' staff may contact Tom Suthard at Assemblymen Amodeo and Brown's office to indicate their interest in becoming a sponsor. Their phone # is 609-677-8266.
FAAN’s Camp TAG, a new day camp for kids 4-12 who are dealing with food allergies,
opened in 2011. Please check with them for the 2013 camp dates. In 2012, the dates were July 9-13 and it was held at Tall Pines Day Camp in Williamstown, NJ.
The 6th annual
(“NEAW”) is 5/13 – 5/19/12
While NEAW is a great time to spread awareness about Eosinophilic Disorders, in reality we
can try to raise awareness every day!
You can find more information and suggestions for ways to spread awareness at
APFED has made the current issue of their EOSolutions Newsletter available to the general
public (it is usually only available to members). This will undoubtedly make it even easier to educate others and raise awareness.
Please check our Fundraisers Page for information about local fundraisers during this week.
To watch Dr Wendy Book, current president of APFED, speaking at the 2012 National EoE Summit in VA, please visit APFED’s You Tube Channel or go to this video directly at http://youtu.be/BhCNWbBG1lc. Dr Book speaks about the history of APFED and how awareness and understanding of eosinophilic disorders has evolved over the years, as well as the challenges facing parents and patients.
In May of 2009, actress/singer Demi Lovado (Disney star) and Ned Spektor (manager for the Jonas Brothers) were honored as APFED's Education Embassadors. Here is a link to the video of their touching speeches at the 5/11/09 Gala in Hollywood:
New consensus recommendations for the diagnosis and management of EoE!
This is an important article to read if you are dealing with
Issue 1 , Pages 3-20.e6, July 2011)
Gene Site Found For Eosinophilic Esophagitis!!!!!
According to a press release from CHOP and article found on EurekaAlert, among other sources:
“EoE was linked to a region of chromosome 5 that includes two genes. The likely culprit is the gene TSLP, which has higher activity levels in children with EoE compared to healthy subjects. In addition, TSLP has been previously linked to allergic inflammatory diseases, such as asthma and the skin inflammation, atopic dermatitis.”
Please make sure your Drs are using the new ICD-9 codes, which became effective on 10/1/2008!
The new codes are:
The new codes are:
558.42 - eosinophilic colitis.
Over the past few years, American Partnership for Eosinophilic Disorders (APFED) worked with the CDC's Center for National Health Statistics (NCHS) to create unique ICD-9-CM diagnosis codes for eosinophilic gastrointestinal disorders. It was very important that new specific ICD-9-CM diagnosis codes be created for eosinophilic gastrointestinal disorders (EGIDs).
“National Eosinophil Awareness Week”
The resolution (House Resolution 296) was unanimously passed on 5/15/07!
National Eosinophil Awareness Week is the 3rd week of May, every year from here on out!
Having this week will help raise awareness for all eosinophilic disorders (EE, EGID, HES, & Churg Strauss).
Congratulations to everyone who worked so hard to get this passed (within a month, no less). Thanks to the parents at APFED who initiated it,
THANK YOU to all of the congressmen & women who agreed to co-sponsor the resolution!
Please see the NEWS Page for details.
This website has been set up by the parent of a child with an eosinophilic disorder, not a doctor. The information shared on this website is not intended to replace advice from your licensed healthcare provider. Decisions regarding medical care should always be made with your licensed healthcare provider. Please consult your doctor before making any changes in medical care. No one should ever disregard or delay seeking medical advice due to the content of this website.