scary thing, especially, when there
are so few people in the world
who know about your disease and
what you are going through. Oftentimes
you have questions but
no one is there to answer them.
At the IPPF we are here to answer
your questions. Because the
questions we receive from patients
are often very similar, we
host calls where patients can learn
live, directly from other patients
and experts, on pemphigus and
pemphigoid (P/P) topics.
The Patient Education Series
has been designed to bring knowledge
and information to patients
all over the world regarding P/P.
The first project in the series is the
monthly Patient Education Calls.
One of the strengths of the
IPPF is our ability to reach individuals
around the world and share
expert-provided information with
those affected by P/P. To that
end, we host a monthly Patient
Education Call with a different expert
panelist each time, focusing
on a different topic.
Some months will be general
question and answer sessions
with either a physician or other
patients. Other months we focus
on specific topics such as oral care,
rituximab, IVIG, and nutrition.
It is a challenge to find
a good time to accommodate
the speaker’s schedule across the multiple
time zones of our community.
For this reason each month we
have the call at a different time
The calls are free to attend but
subject to charges according to
your phone or Voice over IP (VoIP)
provider. Each call is recorded and
key points are made available in a
PDF for you to listen to or read at
your convenience. We understand
some calls may be at inconvenient
times for some people, but we do
everything we can to ensure everyone
can still learn from what
was discussed on the call.
Registration is open on our
website for each call. We promote
the calls through our eBlasts, Facebook,
Twitter, discussion group
emails, and on RareConnect.
Hopefully, these reminders will
help you check your calendar to
see if you can attend. If you aren’t
on our eBlast mailing list please
email me at noelle@pemphigus.
org so that I can add you.
When you register for the call
you will receive an email with instructions.
In the instructions you
will be given the phone number to
call, the access code to enter, instructions
on how to ask a question,
and the etiquette for asking
a question of the panel member.
We also have some international
numbers and online/smartphone
apps to help you get connected.
You don’t have to have a question
to be a part of the call.
callers listen in to learn something
new. We understand it can be difficult
to ask your question during
a live call. For this reason, we provide
an option when you register
to presubmit a question that may
be asked during the live call. If
time does not permit for all of the
presubmitted questions, we have
them answered later on and will
contact you with the results.
Our first Patient Education Call
was in May 2014 as an extension