Support Groups

Online support groups allow individuals living with Fibrodysplasia ossificans progressiva (FOP) and/or their parents to connect with others in a safe environment. We would like to encourage you to join an online support group since it gives you the opportunity to share your thoughts, concerns and questions among the FOP community. It is important that the FOP community keep lines of communication open because we all learn from one another only if we share our discoveries and express ourselves.

  • Post questions or comments for the community
  • Communicate with others in the community in a safe, secure format
  • Participate in discussions


Facebook Groups

1. Support4FOP – Group for individuals living with FOP and/or their parents

2. Parents of FOPers – Group for parents raising a child with FOP

3. FOP Ladies – Group for women with FOP where no topic is off limits

Email Groups

1. FOP Online – Group for individuals living with FOP and/or their parents.

2. Pray for FOP Healing – Diverse group that comes together in the Judeo-Christian tradition of prayer, encouragement and friendship sharing inspirational quotes and prayer requests and celebrating members’ milestones; any denomination is welcome

3. Ladies of FOP – Group of women age 13 and up who discuss issues pertinent to living with FOP


Join an Online Support Group

These groups are generally administered by FOP individuals or, in the case of Parents with FOPers, by a parent of a child with FOP. To join one of these groups, send an email to and we will forward the request to the page or email group administrator.

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