Missed the Conference? You Can Still Learn From the Experts

Patient and researcher meetings are important because they allow engaged members of a rare disease community to organize, strategize, and take action. This year, patient and family meetings were held in Maryland in the United States, Leiden in the Netherlands, and Birmingham the UK. FDF hosted the United States meeting and attended both European meetings. 

If you missed this Fall’s Patient and Family Conference, you missed a weekend packed full of clinical information and uplifting patient stories. It really was an incredible weekend of learning and connecting, but just because you couldn’t make it doesn’t mean you have to miss out. We’ve saved and shared all the livestream video footage from the conference in a playlist on your YouTube channel.

USA Meeting – FDF Patient and Family Conference: November 4th and 5th, 2017

Meeting sponsors included Global Genes, Data Magnus and Everylife Foundation.

Interested in what’s happening in FD/MAS research? Are there new treatments on the horizon? Who exactly is signing up for the FD/MAS Patient Registry, and what’s the point? Watch the Research Panel Presentation.

Ever wondered how MAS affects fertility or what the signs of phosphate wasting are? Check out the Endocrine Panel.

Worried about your optic nerve and whether you should have surgery? Nervous about finding love with all the complications of a rare disease? Clinicians and patients cover these topics and more in the Craniofacial Panel.

Looking for answers about a weight bearing bone? Curious about how strong muscles can help brittle bones? Watch the Orthopaedic Panel.

Want to hear what other clinicians and patients are using to manage pain? Ready to learn about what mindfulness can do for you? Check out the full pain panel for ideas and demonstrations.

Curious about why the tax plan might affect rare disease? Wondering what other patients and families do to cope and fight back? You’ve got to watch the Path to Progress Panel.  

All these videos include patient experience, clinician’s advice, and the latest research on FD/MAS. Read each video’s description (below the video) to locate specific speakers within each panel. Attendees came from as close as down the road, and as far away as Brazil, Romania, South Africa, and Jordan. We hope you’ll join us at the next one!