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Welcome to the NJ/PA Eosinophilic Support
Group |
Home
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Eosinophils
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What is EE?
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What is
EGID?
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Advocacy
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Resources
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Links
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Articles
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Fundraisers
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Meetings
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News
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Contact
Us
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Who are we?
We are a support group for adults and parents of
children with
Eosinophilic Esophagitis (EE) and Eosinophilic Gastrointestinal
Disorders (EGID),
living in NJ,
We offer:
Bi-monthly
local support meetings for adults/parents
Family
Outings
Direction
towards resources in our area & on the web
Fundraising
for research, education, advocacy and awareness
of
Eosinophilic Gastrointestinal Disorders
Please be sure
to visit our Fundraisers
Page
for
information about upcoming important fundraising events!
We need to act!
The
NIH (National Institutes of Health) currently sets aside $0 for EE/EGID
research, despite the increasing prevalence
of
the disorders (the estimated prevalence of Eosinophilic Esophagitis in 2007 was
1 in 2000). If you are interested in
helping
in the push to getting Eosinophilic Disorders on the annual NIH funding list,
please phone & email your senators,
Representatives
and the NIH. Let them know Eosinophilic Disorders have ZERO annual
funding earmarked for research
and
how important that research money would be. Let them know how the disease
affects you and your family.
We
need our legislators to petition the NIH to add Eosinophilic Gastrointestinal
Disorders to the list of
diseases
that get annual NIH research funding, but they need to hear from their
constituents, to let them know
how
important this is.
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APFED (American Partnership For Eosinophilic Disorders) Has created a wonderful new cookbook to help with our special
dietary needs. Some of our own members contributed recipes! It’s called: “Extreme
Cooking for Exceptional Diets” The cookbook is available at the APFED website.
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The 3rd annual National Eosinophil Awareness Week was 5/17 – 5/23/09 That week was a great time to spread awareness; however, every day is a good day to raise awareness about Eosinophilic Disorders ! Just in time, actress/singer Demi Lovado (Disney star) and Ned Spektor (manager for the Jonas Brothers) were honored on 5/11/09 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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New ICD-9 codes became effective on 10/1/2008! The new codes are: 558.42 - eosinophilic colitis. patients with these disorders; EGIDs; 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. |
****DISCLAIMER****
This website has been
set up by parents of children with eosinophilic disorders.
We are NOT
doctors. 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.
Eosinophilic esophagitis, eosinophilic gastroenteritis, eosinophilic
gastritis, eosinophilic colitis, eosinophilic enteritis, eosinophilic
gastrointestinal disease,
eosinophilic, eosinophil, eosinophils,
food allergies, EE, EGID, EG, EC, HES, feeding tube, enteral feeding, g-tube,
ng tube, mic-key button, Neocate,
Elecare, EO28, support group, NJ,