Patient and researcher meetings are important because they allow a rare disease community to learn, 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 in the UK. FDF hosted the United States meeting and attended both European meetings, including the FDSSUK meeting.
Fibrous Dysplasia Support Society UK (FDSSUK) Annual Meeting: November 18th-19th, 2017
Aware of the date of the Leiden meeting, FDSSUK leadership made the savvy decision to schedule their meeting immediately afterward. All of the speakers at this year’s FDSSUK Annual Meeting–Drs. Michael Collins, Alison Boyce, Robert Stanton and Kassim Javaid, as well as patient community leaders Deanna Portero and Valter Dal Pos–came to FDSSUK meeting fresh from the exciting international conference at Leiden that had concluded only the day before.
The meeting took place in Birmingham Children’s Hospital. Attendees included a mix of newly diagnosed families, alongside families and adult patients who have attended several of the Annual Meetings.
In particular, the doctor consults were very well managed at the UK meeting. “Many families attend these meetings because of the opportunity to speak one-on-one with global experts about their particular case. Unfortunately, many cases of FD require a number of specialists to consult together to come to the right decision, so meeting with a doctor one-on-one isn’t always enough. What was really superb about the FDSSUK meeting was that patients and families met with Drs. one-on-five. A single patient would talk to collection of Drs. of different specialties, and then the Drs. could quickly converse and collaborate to come up with the best answers from across their specialities,” recalled Portero. “That’s a great model, that I hope we can replicate parts of for future FDF meetings. It might mean fewer overall consult appointments, but each one would be very valuable, and you’d have fewer mismatches between the type of doctor assigned to a consult, and the family’s questions.”
In addition to world-class presentations on medical care from Drs. Michael Collins, Alison Boyce, Robert Stanton and Kassim Javaid, there were also presentations about how the patient community can mobilize to accelerate progress. FDF executive director Deanna Portero gave a presentation on the evolution of FDF research programs, and an overview of how the FDSSUK might grow their existing programming to become more active in funding and supporting research. EAMAS (Associazione Europea Amici della Sindrome di McCune-Albright) President Valter Dal Pos gave a presentation highlighting various ways that patient groups in Europe can have special and important official roles in approving new treatments, creating improved care networks and unlocking public research funds.
After two days of in-depth educational presentations, the meeting concluded. For more information on the Fibrous Dysplasia Support Society UK, visit www.fdssuk.org.uk.