Calendar

  • FOP Bereaved Families Virtual Gathering

    Thursday, June 24, 2021 at 09:00 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 support each other in loss and grief. In light of the recent deaths of dearly loved members of the community, the group would like to invite any interested individuals to participate in this month's meeting.

    Register by emailing Marilyn Hair at [email protected]

  • National Organization of Rare Disorders (NORD) Patient and Family Forum Living Rare, Living Stronger Interactive Virtual Forum

    Saturday, June 26, 2021 at 12:00 PM through June 27, 2021 Eastern Time (US & Canada)

    This is not an IFOPA-sponsored event. More information at https://rarediseases.org/living-rare-forum

    Living Rare, Living Stronger is an annual patient-focused conference, providing patients and families with practical tools for living their best lives with rare diseases. We will hear from patients, caregivers, and advocates, as well as the medical community and how everyone works together for the benefit of the rare disease community.  
  • Webinar: Advocacy At All Ages

    Wednesday, June 30, 2021 at 12:00 PM Eastern Time (US & Canada)

    Join us as Dr. Sumira Riaz sheds light on the delicate balance of raising a child with a rare disease like FOP, and provides strategies to promote independence and advocacy skills.

    Dr. Sumira is a registered Health Psychologist and Cognitive Behavioral Therapist with over 18 years of experience working within the UK National Health Service (NHS), charity section and healthcare agencies including Atlantis Healthcare and Hive Health and has been with OPEN Health since 2017.

    Collaborative work with pharmaceutical companies has allowed Sumira the opportunity to interact with a few FOP families, and in this webinar she plans to incorporate her expertise in health psychology and child development and assessment to shed light on the delicate balance of raising a child with a rare disease and provide strategies that can be used to promote independence and advocacy skills throughout the childhood, teenage and young adult years.

    This event is geared for parents of people living with FOP.

    Register free here.

    Translation is available in 18 languages.

  • EveryLife Foundation Rare Disease Week

    Monday, July 19, 2021 at 12:00 PM through July 22, 2021 Eastern Time (US & Canada)

    This is not an IFOPA-sponsored event. More information will be available later this year at https://everylifefoundation.org/events-schedule/
  • Global Genes RARE Patient Advocacy Summit

    Tuesday, September 28, 2021 at 06:00 PM through September 29, 2021 Eastern Time (US & Canada)

    This is not an IFOPA-sponsored event. 

    Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. More information at https://globalgenes.org/event/patient-summit/

  • American Society of Bone & Mineral Research Annual Meeting 2021

    Friday, October 01, 2021 at 12:00 PM through October 04, 2021 Eastern Time (US & Canada)

    Metro Toronto Convention Centre, Toronto, Ontario, Canada
    This is not an IFOPA-sponsored event. More information will be available later this year at asbmr.org.

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