|
Overview
The Conquer Chiari On-Line Meeting Place is intended to
provide members of the Chiari community an easy and confidential way to connect
with each other. We believe there is strength in numbers and a certain comfort
in knowing that whatever your Chiari experience, you are not alone. With this
in mind, the Meeting Place is designed to enable people to connect with each
other, no matter what their relation to Chiari is.
Whether you’re a newly diagnosed patient, struggling with
the chronic nature of Chiari, a parent of Chiari child, from a country other
than US, or are looking to start a support group, we believe the Meeting Place
can you help you find the support from your peers you are looking for.
Basically, the Meeting Place provides a way for registered
users to identify people they would like to meet by browsing Public Profiles of
other users which are grouped into categories, such as Chiari Only,
Friends/Family/Spouse, Living With Pain, etc.
Once a user finds someone they would like to meet, they can
send that person an invitation through the Meeting Place. If the invitation is
accepted (based on the inviters Public Profile), the Meeting Place automatically
provides an exchange of emails for the two people. If the invitation is
declined, the original inviter is automatically notified and NO contact
information is exchanged. In this way, contact information (in the form of
names and email addresses) is only exchanged if both people agree.
Once two people connect and receive each other’s email
addresses, any and all future contact and communication is completely up to them
and occurs outside of the Meeting Place. The Meeting Place is NOT a message
board or a public forum, it is a system for people to confidentially exchange
contact information.
If you are interested in using the Meeting Place, or are
already using it, it is important that you read and understand the
Terms and Conditions Of Use.
Using The On-Line Meeting Place
Using the On-Line Meeting Place involves only a few simple
steps:
- Registration
- Creating a Public Profile
- Logging into the system
- Browsing Profiles
- Inviting others to meet
- Responding to invitations to meet
Registration
The first step in using the Meeting Place is to register.
Registration involves selecting a User Name and Password for logging into the
system and providing basic information about yourself: Name, Address, Phone
Number, and Email.
Note your name and email will only be shared with other
users if you accept an invitation to meet.
Your address and phone number will not be shared with other
users (or sold in any way), but are collected for administrative purposes only.
You may update your registration information (for example
if you get a new email address) at any time.
If you wish to remove yourself from the Meeting Place
system, there is an option to do so under Update Registration.
Creating A Public Profile
Your Public Profile is what other users of the Meeting
Place can see, and forms the basis of deciding who to invite to meet. You will
be asked to create a Public Profile when you register.
Your Public Profile contains the following information:
- ScreenName: Your screen name is a name you make up,
such as ChiariLady, in order to protect your privacy.
- Gender: This field is optional, meaning you may
include your gender if you would like, but it is not required.
- Age: This field is optional, but ranges are provided
if you would like to meet people close to your age.
- Location: Like Gender and Age, this field is
optional, but if you would like to meet people near you, you can include
your hometown, state, or whatever you are comfortable with.
- Bio: A short description of who you are, or any
information you want other users to know about you. For example: Young
mom diagnosed after birth of first child. Struggle with headaches and
fatigue, but keeping a positive outlook. It is entirely up to you what
to say about yourself.
- Looking To Meet: This field allows you to describe
the types of people you are looking to meet. For example: Want to talk
with others about complications after surgery, or Looking to meet
other Chiari parents with school issues. Like the Bio field, it is up
to you what to say in this field.
- Categories To Be Listed In: The Public Profiles are
grouped into categories to help people find each other. You can be listed
in as many categories as you like.
You may update your pubic profile, for example to change
your bio or the categories you are listed in at anytime
Logging In
In order to enter the Meeting Place, you must login. To
login, simply enter the username and password you selected when you registered.
If you forget your login information, simply click on Forget Your Login?
and the system will send the information to the email used when you registered.
If you want to avoid having to login each time you visit
the site, you can check Remember Me. Checking Remember Me will place a
cookie on your computer which will allow you to visit the Meeting Place without
having to login for up to one month.
Browsing Profiles
Once you are logged in, you will see a list of categories,
such as Chiari Only, Chiari & Syringomyelia, Friends/Family/Spouse, etc. The
number of profiles listed in each category appears in parentheses next to each
category name.
Clicking on a specific category will list the profiles that
are in that category. You will see the screen name, gender, age, location, and
a few words of the bio and looking to meet fields.
If someone looks interesting, you can click on their screen
name to see their entire profile.
By browsing profiles in this fashion, you can find people
you want to meet.
Inviting Someone To Meet
Once you’ve opened a profile (by clicking on the screen
name) you are given the option to send that person an invitation to meet.
If you decide to invite that person to meet, the Meeting
Place will automatically send that person an email saying you – the email will
only contain your screen name – want to meet them. You may include a short
message in your invitation, such as: I live in Pittsburgh too and am trying
to start a support group.
Once the invitation is sent, the recipient will be given
the option to either accept or decline the invitation.
Note, once you send an invitation to someone, you can not
send them another invitation while you are waiting for a reply.
If They Accept
If they accept your invitation, the Meeting Place will send
you an email saying they have accepted your invitation to meet. The email will
also provide you their name and email address for future communications. In a
similar manner, the Meeting Place will send the person who accepted your
invitation an email with your name and email address. Once contact information
is exchanged, any and all future communication between you and the person you
invited to meet takes place outside of the Meeting Place system.
If They Decline
If they decline your invitation, the Meeting Place will
send you an email stating as such. You will NOT be given their contact
information, and your contact information will NOT be revealed to them. In this
way, contact information is exchanged only if BOTH parties agree. Once you
have invited a person to meet and they have declined, you are not permitted to
send that person another invitation.
Receiving An Invitation To Meet
Based on your Public Profile, it is likely that you will
receive some invitations to meet. When this occurs, you will receive an email
from Conquer Chiari Meeting Place with the subject, Conquer Chiari Meeting Place
Invitation To Meet.
The email will give you the person’s screen name who sent
the invitation and a link to their Public Profile. If you click on the profile
link in the invitation email, you will be taken to the Meeting Place sight and a
window will open displaying the person’s Public Profile. If your browser blocks
pop-ups, this window will not appear. However, you can simply click on the
person’s screen name to display their Profile.
After you have reviewed the inviter’s Profile, you can
either accept or decline their invitation. In either case, you are given the
option to include a short message that will appear in the accept or decline
email that is sent to the inviter.
That is all you need to do. If you accept, the system will
send emails exchanging contact information as described above. If you decline,
the inviter will be notified and no contact information will be exchanged.
After you decline an invitation, that person can not send you another invitation
to meet.
Note, you do not have to answer the invitation
immediately. If you choose not to act upon the email right away, the next time
you login to the Meeting Place, there will be a link to your pending Meet
Requests (the number of pending requests is shown in parentheses). You can
review and respond to these requests at your convenience.
Questions and Comments
Any comments or suggestions should be directed by email to:
director@conquerchiari.org
As stated before, the Meeting Place is intended to help
people find each other. If you believe anyone is misusing the system in any
way, please do not hesitate to report the activity using the email address
above.
|