Register here

The group meets monthly from Noon to 1 pm EDT / 18:00 to 19:00 CEST.

Whether you're a parent or a partner, caring for a loved one with FOP is a unique experience that few can relate to. You deserve a community that understands your life and encourages you through the highs and lows. 

Join our monthly Caregiver Support Group and connect with fellow caregivers to get questions answered, share your experiences, and support each other as you support your loved ones. 

Each session is moderated by counseling psychologist Dr. Al Freedman, whose son lived for 26 years with a rare disease. 

Due to the conversational nature of this meeting, participants must be able to speak and understand English.

Register here

Join the Peer Support Group for Adults with FOP. 

Counseling Psychologist Dr. Al Freedman, who also had a child with a rare disease, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions.

Due to the conversational nature of the meeting, participants must be able to speak and understand English. The meeting lasts for 60 minutes.

Canadian FOP Network Family Conference

Dates: June 12–13, 2025
Format: In-Person and Virtual

Join us for the Canadian FOP Network Family Conference, welcoming individuals living with FOP in Canada and beyond! This event is your chance to connect with Canada-based FOP experts, meet other FOP families, gain valuable insights, and participate in medical and dental clinics tailored to FOP care.

For More Information and To Register: Stay tuned for updates or reach out to Karen Munro at [email protected]

Don’t miss this opportunity to come together, learn, and grow with the Canadian FOP community!

Register here

The group meets monthly from Noon to 1 pm EDT / 18:00 to 19:00 CEST.

Whether you're a parent or a partner, caring for a loved one with FOP is a unique experience that few can relate to. You deserve a community that understands your life and encourages you through the highs and lows. 

Join our monthly Caregiver Support Group and connect with fellow caregivers to get questions answered, share your experiences, and support each other as you support your loved ones. 

Each session is moderated by counseling psychologist Dr. Al Freedman, whose son lived for 26 years with a rare disease. 

Due to the conversational nature of this meeting, participants must be able to speak and understand English.

The FOP Bereaved Families Group is an opportunity for those who have lost a friend or loved one to FOP to come together virtually to support each other.

Join us on Zoom, Thursday, June 26, at 8 pm ET.

Sign up and submit any comments or suggestions in advance by emailing [email protected]

Due to the conversational nature of the meeting, participants must be able to speak and understand English.

22-24 August, 2025
Melbourne, Australia

We are excited to announce the FOP Australia Patient Conference. The conference will be held in person, with some sessions offered virtually. It will feature clinicians from Australia, along with Dr. Ed Hsiao (USA) who will be attending in person, as well as Drs. Fred Kaplan and Bob Pignolo (USA) who will be attending virtually. The program is currently under development. More details coming soon.

To register, email [email protected]

For more information, contact Brooke Scott at [email protected]

The FOP Family Gathering provides opportunities to meet others in the community and to have your questions answered by leading experts in the field.

The whole family is invited, and onsite childcare and children’s activities will be provided.

This year's agenda will include sessions where people living with FOP and their families can gain insightful knowledge and practical tools to advocate for themselves, manage their health, and live their best lives.

Registration opens May 1.

For more information, click here. 

Hear from 2024 Family Gathering attendees. 

After 2025, Family Gathering will move to an every-other-year event.