Support Groups are community based
groups of people who are affected by OI.
Support Groups are required to
meet 2 times a year; additional meetings are encouraged.
Groups vary in size.
Each group has a leader or a team of
Support Groups and Support Group Leaders are very important!
Support Group Leader is the key person who:
the OI Foundation to the local community
the needs and interests of the local community to the OI Foundation
people in the local community to each other.
What does a Support Group leader do?
Plans and makes arrangements for the meetings
Notifies the OI Foundation before each meeting so it
can be posted on the online calendar and an e-mail announcement sent
Keeps a list of group members
Sends a report to the OI Foundation office after each
Agrees to have their name contact information posted
on the OI Foundation website
a phone number on the website is optional Note: To
protect privacy, the OI Foundation advises Support Group Leaders to set up a separate G-mail or Hot-mail
account for support group business
Participates in OIF national
projects such as OI Awareness Week
How can I start a new group?
Contact the OI Foundation
Office by email at Bonelink@oif.org
or by telephone (301-947-0083 or 800-981-2663) to receive a Support Group Leader Kit.
To start a group, you will be
Fill out a Registration Form
Identify the geographic area that your group would
serve; this can be a city, county or state
Write a letter introducing yourself to potential
Locate a meeting place that is free of charge and
accessible to all
Is help available from the OI Foundation?
The Foundation will support you at
every step! The Support Group Leader
Kit provides detailed information on starting a group and keeping it
going. In addition, an OI Foundation staff person will be available to answer
questions, and assist you. In addition the OI Foundation will:
Send email announcements to people in your state for
Put you in touch with other group leaders
Help setting up a Facebook page for your support
Provide you with information about OI
Provide training as part of each National Conference and
as other opportunities come up
Provide insurance for all meetings listed on the