Patient & Family Conference Continues the International Fight against FD/MAS.
FD/MAS is a disease without borders or boundaries. All FD/MAS patient groups share goals, including connecting families with the best available treatment information, and advancing the search for a cure or treatment for this rare disease. Patient meetings are important to reaching these goals. Patient meetings help advance the fight against FD/MAS by empowering patients with treatment information, engaging the patient community with tools to make change, and building social networks of mutual support. This November, meetings will take place in Silver Spring (Maryland, USA), Birmingham (England), and Leiden (the Netherlands).
The conference in the United States will be held November 4th and 5th at FDF’s Patient & Family Conference held in Silver Spring, MD. The two day conference will feature over 12 leading clinical experts working with FD/MAS patients from all over the world. Several of these experts will go on to attend the International Consortium meeting in Leiden, the Netherlands November 15th to the 17th and the Fibrous Dysplasia Support Society of the United Kingdom meeting November 18th and 19th at Birmingham Children’s Hospital.
The FDF Conference in the United States will have a distinct focus on patient questions and priorities. The conference will feature 6 panels that cover the most important questions patients have regarding FD/MAS: endocrine issues, craniofacial issues, orthopedics, pain management, research, and patient activism.
In addition to clinical experts working in the field, each panel will also feature a patient or parent who can offer experience and insight on a particular topic. The panel format is designed to foster dialogue and focus the conversation on the questions and experiences of patients. Each panel will have time for discussion as well as questions from the audience. Questions can be delivered during the Q&A, or attendees can submit questions in advance of the FDF Patient & Family meeting as part of the registration process. Tickets prices will increase starting in October, so patients are encouraged to register as soon as possible.
Attendees will also have an opportunity to consult clinicians, one-on-one, and mingle with each other at a patients-only social hour. The patient social hour was an important addition brought about by FDF Vice President Lauren Ruotolo. “I want scientific advancements to be informed by real patients living real lives. This meeting is an opportunity for us to be in the room where these conversations are happening, and for us to share our stories.” said Ruotolo.
For the first time ever, the FDF’s Patient and Family Conference will be livestreamed. Any stakeholder can register for free access to the livestream on the main conference website. Registration is open to US and non-US residents. There will be opportunities for patient-doctor and patient-patient interactions engagement for digital participants.
The three-day meeting in Leiden at the Leiden University Medical Center will include ample working time for clinical researchers to update their joint guidelines for clinical management of FD/MAS, and offer basic researchers and clinicians a chance to meet and discuss new research progress. The agenda of the first two days (November 15th-16th) of the Dutch meeting is intended for a researcher-audience, but several major FD/MAS patient organizations are sending representatives to ensure that the patient perspective is included throughout the meeting. The third day of the meeting (November 17th) will be open to all patients and families affected by FD/MAS, and will include information about clinical care and upcoming research. The organizers of the meeting are three clinical researchers: Dr. N.A.T. Hamdy, internist-endocrinologist, Prof. Dr. P.D.S. Dijkstra, orthopedic surgeon, and Dr. N.M. Appelman-Dijkstra, internist-endocrinologist. Dr. Appelman-Dijkstra consulted with the FD/MAS patient organization Patiëntenvereniging Fibreuze Dysplasie, FDF, and other FD/MAS patient organizations to develop the meeting agenda.
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The two-day meeting in Birmingham, England at the Birmingham Children’s Hospital will take place immediately after the meeting in Leiden. The meeting is being organized by Fibrous Dysplasia Support Society UK. On November 18th and 19th, the UK patient community will come together to learn about FD/MAS medical care, and to strategize about how the UK FD/MAS patient community can further contribute to progress. The date of the UK meeting was selected to take advantage of the US-based experts who will already be in Europe following the meeting in Leiden, including Drs. Alison Boyce, Michael Collins and Robert Stanton, as well as FDF executive director Deanna Portero.
Patients from all over the world are welcome to attend any of the three international meetings taking place this fall.
