Online Support Groups

Patients and Families

Online Support Groups


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 secret, private 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. 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.

None of Facebook groups listed are operated by the IFOPA. 

FOP Support Groups on Facebook

Support4FOP (Secret)

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 and Theresa Caruso

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

Ifopers Latinos

Ifopers Latinos will be used to help and support Spanish-speaking patients and families with FOP with important information. This group will be sharing information from the IFOPA translated into Spanish and will also provide an opportunity for community members to meet and talk about your experiences with FOP. The group is a supportive place to ask questions and get help finding answers or connecting to the IFOPA to get more detailed answers.

Administrators: Paulina Gutierrez, US and Magdalena Villar, Mexico 

Young Adult Virtual Meet-up Group

This group is for individuals with FOP between the ages of 18 and 40 who speak English. The group will be used primarily as a tool to schedule regular virtual meetings

Administrator: Holly LaPrade

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 Ola Östergren 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

DADs and FOP 

For any fathers and step-fathers of individuals living with FOP. 

Administrator: Adam Richwine

FOP Mothers

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

Administrators: Lori Henrotay and Suzanne Hollywood

FOP Siblings

For siblings of individuals with FOP.

Administrator: Hope Newport

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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