Online Support Groups

Patients and Families

Online Support Groups

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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: Private and Public

Please note that Facebook groups are set to either private or public. Private 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. 

For further clarification on the group types, head over to Facebook’s Help Center. If you have questions about joining a specific group, please contact the group administrator(s) listed. For general questions, email us.

 All the Facebook groups listed are not operated by the IFOPA. Download a printable version of this list.

Private FOP Support Groups on Facebook

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.

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 questions you may have. Most questions get some response within a couple of hours, and often within a few minutes.

Administrators: Steve Eichner, Nancy Eichner, Theresa Caruso and Oliver Collins

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 and Nancy Sando 

FOP Gamers

FOP Gamers is a private online group for FOP community members who are interested in connecting with one another over their love for video gaming. It is "A fun gaming group where friends can have fun!"

Administrator: Jonathan Carmichael

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, Sweden; Suzanne Hollywood and Rory Otto, USA; Brooke Scott, 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

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 and Suzanne Hollywood

UK FOP’ers

A UK-centric group for individuals living with FOP and their parents, primary caregivers and grandparents.

Administrators: Helen Bedford-Gay and Christopher Bedford-Gay

FOP Australia – Patients and Families

An Australian-centric group for individuals living with FOP and/or their families.

Administrators: Brooke Scott and Talia Wilson

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 and Stacie Miller

Lady FOPers

For women living with FOP (age 18 and older)

Administrators:  Ashley Kurpiel

FOP Men 

For any man (including dads, brothers, uncles, husbands or other male caregivers) affected by FOP. 

Administrator: Kyle Wallace

FOP Mothers

For mothers and step-mothers of individuals living with FOP.

Administrators: Lori Henrotay and Suzanne Hollywood

 

FOP Closed Email Support Group

FOP Online

For individuals living with FOP, their parents and/or other caregivers.

Administrator: The IFOPA

To join: Email us 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, email us.

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