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Welcome to NJ/PA Eosinophilic Information |
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Eosinophils
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What is EoE?
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What is
EGID?
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Resources
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Links
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Us
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We have a
new name! Recently
renamed “NJ/PA Eosinophilic Information”, we provide news and direction
toward resources in the New Jersey / Pennsylvania area, as well as across the
internet, 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 new 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. While this site
was initially created to provide information for local support of those
dealing with eosinophilic esophagitis and
eosinophilic gastrointestinal disorders, the scope and purpose has expanded. |
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The 6th annual National Eosinophil Awareness Week (“NEAW”) is 5/13 –
5/19/12 While that week 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 http://apfed.org/drupal/drupal/national_eosinophil_awareness_week 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. 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's a link to the video of their touching speeches at the 5/11/09 Gala in Hollywood: http://www.youtube.com/watch?v=KDV4lq3LU_4 |
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National EoE Summit in
Washington, DC On June 22, 2012,
the 2nd annual National EoE Summit will be held at the Ritz-Carlton, Tysons Corner, in McLean, VA. It is an event specifically for
physicians. It will feature leaders in
the field of Eosinophilic Disorders who will discuss the latest developments. Please be sure to
let your gastroenterologists and allergists know about this event. It is important for Drs to be as familiar
with the diagnosis and treatment of EoE/EGID as
possible, as they can then provide better treatment to their patients.
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NJ/PA Elemental Formula Legislation 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 https://www.facebook.com/ 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.
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Camp TAG FAAN’s
Camp TAG, a new day camp
for kids 4-12 who are dealing with food allergies, opened in 2011.
They are currently taking online registration for Tall Pines Day Camp
in Williamstown, NJ. Camp dates July
9-13, 2012
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Happy 10th Anniversary to the American
Partnership for Eosinophilic Disorders! That’s 10 years of education, advocacy and
research! So much has been accomplished, but there is still
so much more to be done! APFED has also just added new interactive
pages for kids to their
website, with new characters: “Gus” the esophagus and “Phil” the eosinophil. They have plenty of new content on their
site:
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9/6/11 UPDATE:
Congratulations to CURED Foundation.
They were the Central Region winners in the Vivint.givesback
project, and have won $100,000! |
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New
consensus recommendations for the diagnosis and management of EoE! This is an important article to read if you are
dealing with Eosinophilic Esophagitis! "Eosinophilic Esophagitis: Updated consensus
recommendations for children and adults"
Volume 128,
Issue 1 , Pages 3-20.e6, July 2011) |
BIG
NEWS!!!! 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.” http://www.eurekalert.org/pub_releases/2010-03/chop-gsf030410.php |
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ICD-9
Codes Please make sure
your Drs are using the new ICD-9 codes, which became effective on
10/1/2008!
558.42 - eosinophilic colitis. these disorders; 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, ~And~ THANK
YOU to all of the congressmen & women who agreed to co-sponsor the
resolution! Please
see the NEWS Page for details. |
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****DISCLAIMER**** 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. |