Patients and caregivers in the US: Discover a new treatment option at a Regeneron webinar
Tuesday, September 22, 2026 at 08:00 PM Eastern Time (US & Canada)
Patients and caregivers in the US are invited to learn about a new treatment option for appropriate patients with FOP in this educational webinar, sponsored by Regeneron.
2nd Annual Caddyshack & Extra Pint Golf Outing
Friday, September 25, 2026 at 11:00 AM through September 26, 2026 Eastern Time (US & Canada)
Sharif Latif and Varun Kalra, operators of two sports bars in New Jersey (Caddyshack and Extra Pint) are hosting the Second Annual Caddyshack & Extra Pint Golf Outing in honor of Sona Brinkman. The event will be held on Friday, Sept. 25, 2026 at 11:00 AM. Participants will come together and tee it up to support FOP research, with the proceeds from this year's event going to the 2026 In Pursuit of a Cure campaign: Journey to the Future!
October FOP Peer Support Group
Tuesday, October 13, 2026 at 12:00 PM Eastern Time (US & Canada)
This month's Peer Support Group for Adults with FOP meets from Noon to 1 pm EDT / 18:00 to 19:00 CEST.
The group provides an opportunity to connect and share experiences, suggestions and techniques to navigate challenges brought up in group discussions.
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.October FOP Caregiver Support Group
Tuesday, October 20, 2026 at 12:00 PM Eastern Time (US & Canada)
The Caregiver Support 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 meeting lasts for 60 minutes.
October FOP Bereaved Families Virtual Meeting
Thursday, October 22, 2026 at 08:00 PM Eastern Time (US & Canada)
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, October 22, 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.FOP Transitions in Care Fireside Chat
Monday, November 16, 2026 at 02:00 PM Eastern Time (US & Canada)
Join Us for an FOP Transitions in Care Fireside Chat
What does “transitions in care” mean for people living with FOP—and when should families start thinking about it?
Join us for a live Fireside Chat and Q&A with Dr. Richard Chung, Dr. Kenneth Ginsburg and Hope Newport for a preview of the upcoming Transitions in Care workshop at the 2026 FOP Family Gathering.
During this 20-minute conversation, our panelists will discuss the key life skills and concepts behind transitions in care, including how young people can build the skills needed to take a more active role in their care and develop greater independence. They’ll also explore the important role parents play, whether it’s ever too late to begin building these skills and how transitions extend beyond medical care into other areas of life.
You’ll also get a preview of the Transitions in Care workshop, including who it’s designed for, what to expect, how the session will be structured and how participants can prepare.
The conversation will close with a live Q&A, giving you the opportunity to bring your own questions directly to the panel.
Register here to join us for this special conversation and get ready for the Transitions in Care workshop at the 2026 FOP Family Gathering.
