The following online support groups via Facebook and email allow individuals living with fibrodysplasia ossificans progressiva (FOP) and/or their family and friends to connect with others.
Facebook Groups: Secret, Closed and Public
Please note that Facebook groups are set to either secret, closed or public. Secret groups cannot be found from nonmembers in a search. Only current members can see who is in the group. To join, one must be invited or added by a member, and then approved by a group administrator. For a member to add you to the group, you must be connected as friends on Facebook. Closed groups are visible in a search to nonmembers, but they will not be able to view the page posts. To join, anyone can ask by clicking the “Join Group” button on the page. They will then have to be approved by a group administrator. Public groups are visible and open to anyone. Individuals can join by clicking the “Like/Follow” button on the page.
For further clarification on the group types, please see this table from Facebook’s Help Center. If you have questions about joining a specific group, please contact the group administrator(s) listed. For general questions, contact [email protected].
All the Facebook groups listed are not operated by the IFOPA. Download a printable version of this list.
FOP Support Groups on Facebook (Secret)
To join any of the secret groups below, contact one of the group administrators listed so that they can invite you to join from Facebook, or ask a current member (if you know of one) to invite or add you. Once a member, you can invite others to join by using the Facebook invite tool. Make sure to send the administrator a private message and let them know the relationship so that he/she can approve it.
Support4FOP
Support4Fop has been established as a community for the support of individuals living with FOP, their immediate family, and their caregivers. Currently, there are over 600 participants from around the world. Community members have a wealth of experience and information to share to help you understand and live with FOP. Please feel free to ask any question you may have. Most questions get some response within a couple of hours, and often within a few minutes.
Administrators: Steve Eichner [email protected], Nancy Eichner, Theresa Caruso [email protected] and Oliver Collins [email protected]
FOP Bereaved Families
FOP Bereaved Families is a private online forum for family members and close friends of loved ones with FOP who have passed away. The IFOPA and FOP community supported us during our FOP journey; this group is an opportunity for those of us who have lost a family member to FOP to support each other in our loss and grief.
Administrators: Marilyn Hair [email protected] and Nancy Sando [email protected]
FOP Trash Can
A place for adults 18+ living with FOP and/or their parents to communicate freely and vent without judgment.
Administrators: Marie Fahlberg [email protected], Sweden; Suzanne Hollywood [email protected] and Rory Otto [email protected], USA; Brooke Scott [email protected], Australia
Leva med FOP (Living w/ FOP Scandanavia)
For individuals living with FOP or anyone who is affected by FOP (family and friends). Topics include FOP, the Scandinavian FOP Association and the IFOPA.
Administrators: Annalena Josefsson and Ann-Sofie Klint at the Scandinavian FOP Association [email protected]
Parents of FOP’ers
Designed for parents (or primary caregivers/guardians) and grandparents of individuals living with FOP to discuss issues surrounding parenting an FOP child. No FOP’ers are in this group unless the parent themself has FOP and has a child with FOP.
Administrators: Helen Bedford-Gay [email protected] and Suzanne Hollywood [email protected]
UK FOP’ers
A UK-centric group for individuals living with FOP and their parents, primary caregivers and grandparents.
Administrators: Helen Bedford-Gay [email protected] and Christopher Bedford-Gay [email protected]
FOP Support Groups on Facebook (Closed)
To join any of the closed groups below, go to the page website and ask to become a member by clicking “Join Group.” One of the group administrators will follow up with you.
FOP Australia – Patients and Families
An Australian-centric group for individuals living with FOP and/or their families.
Administrators: Brooke Scott [email protected] and Talia Wilson [email protected]
FOP Australia - Patients and Families Group page
FOP Ladies
For women living with FOP (age 13 and older) and mothers of girls with FOP, where no topic is off limits.
Administrators: Brooke Scott [email protected] and Stacie Miller [email protected]
FOP Ladies Group Page
Lady FOPers
For women living with FOP (age 18 and older)
Administrators: Ashley Kurpiel [email protected]
FOP Mothers
For mothers and step-mothers of individuals living with FOP.
Administrators: Lori Henrotay [email protected] and Suzanne Hollywood [email protected]
FOP Closed Email Support Group
FOP Online
For individuals living with FOP, their parents and/or other caregivers.
Administrator: The IFOPA [email protected]
To join: Contact [email protected] to have an invite sent to your email address.
Questions about Support Groups
These groups are generally administered by FOP individuals or, in the case of Parents with FOP'ers, by a parent of a child with FOP. If you have questions about joining a specific group, please contact the group administrator(s) listed. For general questions, contact [email protected].
