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: 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 together@ifopa.org.

 All the Facebook groups listed are not operated by the IFOPA. For a printable version of this list, click here.

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 steve.eichner@gmail.com and Nancy Eichner 

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 mariehfahlberg@gmail.com, Sweden; Suzanne Hollywood suziewood811@verizon.net and Rory McCloskey Otto roryotto@gmail.com, USA; Brooke Scott brooke_scott@y7mail.com, 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 info.fopforeningen@gmail.com

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. 

Administrators: Helen Bedford-Gay helen@fopfriends.com and Suzanne Hollywood suziewood811@verizon.net

UK FOP’ers

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

Administrators: Helen Bedford-Gay helen@fopfriends.com and Christopher Bedford-Gay chris@fopfriends.com

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 brooke_scott@y7mail.com and Talia Wilson taliajwilson@hotmail.com

FOP Australia - Patients and Families Group page

FOP Ladies

For women living with FOP, age 13 and older, where no topic is off limits.

Administrators: Brooke Scott brooke_scott@y7mail.com and Stacie Miller fightingonproudly@gmail.com

FOP Ladies Group Page

FOP Mothers

For mothers of individuals living with FOP. If you are a grandmother, aunt or other female caregiver, there is a link from this page (located in the cover photo) to a public group called FOP Mamas that is open to everyone.

Administrators: Lori Henrotay lhenrotay19@me.com and Suzanne Hollywood suziewood811@verizon.net

FOP Mothers Group Page

FOP Closed Email Support Group

FOP Online

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

Administrator: The IFOPA together@ifopa.org

To join: Contact together@ifopa.org 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 together@ifopa.org.

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