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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 strive to offer:
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 You can find more information at |
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New ICD-9 codes became effective on
10/1/2008! http://apfed.org/downloads/ICD9%20codes%20approved_RWB1.pdf
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, esophagus, gastric, colon, intestinal, food allergies,
EE, EGID, EG, EC, HES, feeding tube, enteral feeding, g-tube,
NG tube,
mic-key button, Neocate, Elecare, EO28, support group, New Jersey, NJ,
Pennsylvania, Delaware, DE, treatment, cure, cured, research,
advocacy,
NJ/PA, NIH