Connect with friends

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Coming to terms with a diagnosis takes time.  Some people feel more ready to reach out sooner than others; some people never feel ready.  If and when you do want to speak with people who are on the same journey as you, then there is a worldwide community ready to welcome you.  Remember, you are not alone.

The following online support groups, via Facebook and email, allow individuals living with FOP and/or their family and friends to connect with others.  The Facebook groups listed below are not operated by FOP Friends and as such, we cannot take responsibility for the content or advice given, or the views expressed by the members.

One of the benefits of social media has to be its ability to connect individuals around the world and transform them into a strong community.  The FOP community is a testament to this.

There are many different groups for the FOP community, which meet and reflect the needs of people who are affected in some way by the condition.

Due to the personal nature of these groups, they are all set to closed or secret:

* Secret groups cannot be found from non-members 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 non-members, 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.

If you want to join any group but are unsure how to make the introduction, get in touch with us at FOP Friends and we’ll contact the administrator of the group/s for you.

All views expressed in these groups are those of the member, and FOP Friends can take no responsibility for any advice given.  The views of members are exactly that, and may not be representative of FOP Friends.  This includes any conversations about clinical trials; the efficacy of them; and whether or not to participate in them.

Any advice given in the groups should be discussed with a qualified medical professional before changes are made to a person’s care.  Members can only share anecdotal advice and this is not a substitute for qualified medical advice from a trusted and knowledgeable professional.  Members heed the advice of others at their own risk.

FOP Families UK

A closed Facebook group for people in the UK living with FOP, and their close family.  A place to chat quietly about things affecting them and a place to ask for and offer advice and support, with a UK focus.

There is also a WhatsApp group for those not on Facebook.

Please contact FOP Friends to be added.


Support4Fop has been established as a community for the support of individuals living with FOP, their immediate family, and their caregivers for many years.  Currently, there are over 700 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.

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. As the IFOPA and FOP Community supports people during their FOP journey; so they continue to do so after a person with FOP has passed away.

This group is an opportunity for those of people who have lost a family member or close friend to FOP, to support each other in their loss and grief.  This group welcomes people from all faiths and beliefs.

The IFOPA also hold regular sessions to give opportunities to those people who have lost someone with FOP, to connect with others.

For a comprehensive list of all the current Facebook groups, click on the leaflet to download.