Baltimore Family Gathering Wrap-up

Connecting. Learning. Growing.

We were so happy to meet new FOP’ers and reconnect with longtime friends at the FOP Family Gathering in Baltimore this November. We were especially grateful for the opportunity to gather together as a community and honor the IFOPA’s 30th anniversary over the course of the weekend, including a special denim and diamonds themed dinner and dance celebration on Saturday evening.

Thank you to everyone who made the trip and experienced three days of connecting, learning, and growing with the IFOPA!

First-time attending families traveled from as far away as Mexico City, and we also welcomed leaders from around the world representing the International President’s Council.


Breakout sessions returned this year and more extended family members joined us than ever before. Grandparents, siblings, spouses, and aunts and uncles connected with each other to provide support and share information.

The brand new Fun Zone kept kiddos entertained throughout the Gathering and was the perfect place to make new friends along with some pretty cool science and team building projects!


Gathering general sessions covered clinical trials, independent living, dental care and other health-related topics. Attendees also benefited from a session and breakout groups on emotional resilience.


The IFOPA launched its new FOP Biobank at the Family Gathering in Baltimore. The FOP Biobank is a centralized collection of tissue and blood donated by people with FOP, their families, and anyone else, to be used for FOP research by qualified scientists around the world . Even if you weren’t at the Gathering you can take part in FOP research, learn more. The Gathering also provided an opportunity to participate in the University of California, San Francisco Microbiome Study. We’re growing FOP research and making it easier for FOP’ers to take part in it.

Let’s keep the great energy of the FOP Family Gathering going! Here are some ways to stay connected, keep learning and continue growing with the IFOPA:

In November 2019 we’ll be in Orlando, Florida. We’ll share more details as they become available.

We are grateful to the sponsors who helped make the Family Gathering possible for the FOP community.

Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter