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NF2 Patient Packets and NF2 Hospital Orientation Packets
Now Available
NF2 Patient Packet
This packet contains a variety of literature providing both
general and specific information to assist newly diagnosed
NF2 patients, families, and caregivers. Materials include NF,
Inc.'s trifold brochure, a current newsletter, insurance guidelines,
a list of helpful resources, and information on the NF2 Crew,
Advocure, and other NF2 community support groups and services.
Hospital Orientation Packet
This packet contains information/aids designed
to answer many questions, give tips, and provide -- especially
for the hard of hearing or deaf patient who is about to go
to
the hospital -- a little specific assistance.
Included in the packet are many helpful websites, dealing
with everything from disability services, deafness, signing,
patient advocates, and social security denial, to a site where
you can keep everyone with internet access up-to-date on the
patient’s condition with one entry.
Also incluced is a booklet entitled, “How to Make
the Medical System Work for You,” authored by Donna Getz.
There is information on Mercy Travel, Angel Airlift, and the
Association
of Hospitality Houses, that might be of help if you have to
travel for medical care.
There are even signs for on your door or above your hospital
bed that say “Hard of Hearing” or “Deaf –
Please Sign; Write; Speak Slowly.” There is even a little
sticker to put at the Nurses' Station to remind them you are
deaf/hard of hearing; that way, when you ring the buzzer for
assistance, they don’t come over the intercom and expect
a reply!!
NF, Inc. has distributed this packet to 86 physicians listed
in their NF2 Resource Guide, encouraging the physicians to distribute
this information to their patients.
If you need a copy of either or both of these packets,
please e-mail the NF, Inc. NF2 representative at MarieDrew@nfinc.org,
providing your complete mailing address. Please specify which
packet(s) you are requesting. If you have a surgery scheduled,
it would be helpful for us to know where it will be performed,
but
this
is not necessary information. If you do not have computer
access,
you may phone toll free 1-800-942-6825.
NF2'ers review the Hospital Orientation Packet
at the NF2Con in Las Vegas, April 2005.
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