Calendar of Events

  • Financial Planning & Government Benefits Community Panel

    Tuesday, December 05, 2023 at 03:00 PM Eastern Time (US & Canada)

    Join us in closing out the 2023 Family Services program offerings by registering for our community panel discussion on this year's Advocacy Series topic "Financial Planning and Government Benefits."

    We're excited to welcome Jaclyn, Kimi, Patrick and Miriam to the stage to share their experiences accessing and paying for off-label drugs, vehicle conversions, safety equipment, and caregiver support. We'll also discuss tips for enrolling in government programs and how they can help families gain access to the financial resources they need!

    Register to join us on December 5 at 3 pm ET and submit your questions in advance by emailing Hope Newport at [email protected]

    Register now

  • Peer Support Group for Adults with FOP

    Thursday, December 07, 2023 at 11:00 AM Eastern Time (US & Canada)

    The group is an opportunity for members of the FOP community to meet monthly for an online session which will be moderated by counseling psychologist Al Freedman, dad of a son who lived for 26 years with another rare disease.

    The group will provide opportunities for connection between community members by creating a safe space for socializing and sharing challenges related to life with FOP. The group moderator will offer suggestions and techniques to help navigate challenges that are brought up in group discussions.


    Thank you to BioCryst for sponsoring our Family Services Programming:

  • FOP Friends Conference and Family Gathering 2024

    Friday, May 10, 2024 at 09:00 AM through May 12, 2024 Eastern Time (US & Canada)
    Manchester, UK

    May 10-12, 2024
    Manchester, England

    Save the date for the FOP Friends' Conference and Family Gathering 2024 which will be held in person in Manchester, England.

    Questions? Contact Helen Bedford-Gay at [email protected]

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