Join us for the 8th Annual, all VIRTUAL, Million Dollar Bike Ride on June 12, 2021! Your participation as a virtual cyclist or a donor for Team #cureFOP will help us raise much needed funds to make brand new FOP research grants a reality. You can ride any bike, any location! To sign up or donate, visit ifopa.org/mdbr_2021. Questions? Contact IFOPA Community Fundraising Manager Cathryn Roys at [email protected]

Let's come together, connect, and have fun journaling!

This workshop is part of a series targeting teens and tweens with FOP, as well as their siblings, to help them:

• Discover the power of their mindset
• Handle negative feelings and self-talk
• Create and plan out goals
• Overcome challenges and setbacks
• Build resilience and gratitude

FREE Big Life journal for all participants!
Register here

This workshop is offered in English. Participants must be between the age of 8 and 16 by March 1, 2021.
Learn more

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]

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.

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/.