Calendar

  • FOP Caregiver Support Group

    Tuesday, June 18, 2024 at 12:00 PM Eastern Time (US & Canada)

    Whether you're a parent or a spouse/partner, caring for a loved one with FOP is a unique experience that many people can’t relate to. You deserve a community that understands your life and encourages you through the highs and lows. In our new monthly FOP Caregiver Peer Support Group, connect with fellow caregivers to get questions answered, share your experiences, and support each other as you support your loved ones.

    This group is open to any parent or spouse/partner of an individual living adult with FOP (18+) no matter where you live. However, due to the conversational nature of the meeting, participants must be able to speak and understand English.

    Each session is moderated by counseling psychologist Dr. Al Freedman, dad of a son who lived for 26 years with another rare disease. Al, who has been working with the FOP community since 2022, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions. 

    Register 

  • 6th FOP Drug Development Forum

    Wednesday, June 26, 2024 at 05:00 PM through June 28, 2024 Stockholm
    Elite Hotel Tower Marina, Stockholm, Sweden

    The DDF brings together biotech and pharmaceutical companies, academic researchers and clinician scientists to collaborate and advance FOP research. It's an opportunity to discuss emerging FOP data and highlight gaps in our understanding of FOP disease pathogenesis that could offer new therapeutic options. The June 2024 event offers both in-person and virtual attendance options. Due to the content being shared, only FOP family members who are invited to speak or are members of the International Presidents' Council or IFOPA's Research Committee may register.

    With the first-ever treatment for FOP approved in select countries and five active FOP clinical trials, there is still an abundance of preclinical research with the potential to be translated into safe and effective new medicines. Molecules advancing drug discovery, advanced therapeutic modalities and new technologies must continually be explored for their potential to treat understudied signs and symptoms of FOP.

    Learn More & Register

    Interested in Exhibit and Sponsorship Opportunities? Email [email protected]

  • Midnight Sun Color Run

    Saturday, July 06, 2024 at 03:00 PM Pacific Time (US & Canada)
    1st Bridge Fairgrounds, Kotzebue, AK

    The 10th Annual Midnight Sun Color Run event is hosted by Lucy Mae McConnell and Jade Hill in honor of Jade's daughter, Dilyn, who lives with FOP.

    Date & Time: Saturday, July 6, beginning at 3 pm

    Location: 1st Bridge Fairgrounds, Kotzebue, AK

    Tickets: Tickets are available From $10 to $50 per person and sponsorships are available for $300

    More Information: ifopa.org/midnight_sun_color_run_2024

  • Peer Support Group for Adults with FOP

    Tuesday, July 09, 2024 at 12:00 PM Eastern Time (US & Canada)

    The IFOPA's Peer Support Group for English-speaking adults with FOP is an opportunity for community members to meet monthly for a 90-minute session moderated by counseling psychologist Dr. Al Freedman, dad of a son who lived for 26 years with another rare disease.

    Now in its second year, the group provides opportunities for connection between community members by creating a safe space for socializing and sharing challenges related to life with FOP. The group moderator, Dr. Freedman, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions. 

    This group is open to any adult with FOP (18+) no matter where you live. However, due to the conversational nature of the meeting, participants must be able to speak and understand English. The group meets monthly from Noon to 1:30 pm EDT / 18:00 to 19:30 CEST.

    Register

  • FOP Caregiver Support Group

    Tuesday, July 16, 2024 at 12:00 PM Eastern Time (US & Canada)

    Whether you're a parent or a spouse/partner, caring for a loved one with FOP is a unique experience that many people can’t relate to. You deserve a community that understands your life and encourages you through the highs and lows. In our new monthly FOP Caregiver Peer Support Group, connect with fellow caregivers to get questions answered, share your experiences, and support each other as you support your loved ones.

    This group is open to any parent or spouse/partner of an individual living adult with FOP (18+) no matter where you live. However, due to the conversational nature of the meeting, participants must be able to speak and understand English.

    Each session is moderated by counseling psychologist Dr. Al Freedman, dad of a son who lived for 26 years with another rare disease. Al, who has been working with the FOP community since 2022, will offer suggestions and techniques to help navigate challenges that are brought up in group discussions. 

    Register 

  • Massacre on the Mullica Cornhole Tournament

    Saturday, July 27, 2024 at 12:00 PM Alaska

    The 5th Annual Massacre on the Mullica event is hosted by Craig Zincavage, Debby Finnegan and Krys Mauz. The event is in honor of Krys who lives with FOP. It is open to all ages.

    Date & Time: Saturday, July 27, beginning at 12 noon
    Location: 1st Bridge Fairgrounds, Kotzebue, AK
    Tickets: Register as a player or a team. Sponsorships are available for $150.
    More Information: Contact Craig at [email protected] or Debby at [email protected].

  • FOP Family Gathering 2024

    Thursday, November 07, 2024 at 09:00 AM Eastern Time (US & Canada)
    Denver, Colorado

    Registration Now Open

    The FOP Family Gathering 2024 will take place November 7-9 in Denver, Colorado.

    View the preliminary agenda, get registration details and register now. 

    Curious to See What a Family Gathering Looks Like? Check Out the 2023 Highlights Video!

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