Videos and slide presentations from the 2017 Conference can be found here.
Our last Patient & Family conference last on November 4th and 5th, 2017 in Silver Spring, Maryland. Our next conference will be scheduled for 2019.
2017 Meeting Agenda
The meeting ran from 8am-6pm Saturday November 4th and 8am-3pm Sunday November 5th. For a detailed program of events, click here.
Learn what scientist know and don’t know about FD/MAS, and what that means about progress toward better treatments.
Confirmed Speakers: Michael Collins, Alison Boyce, Mara Riminucci, Amanda Konradi, and Cindi Brandt Levin
Cranio Care Panel
FD in the skull is common, but managing it can be complicated. Learn what you need to know to make decisions about your care.
Confirmed Speakers: Andrea Burke, Janice Lee, Edmond Fitzgibbon, and Wendy Daubel Thompson.
Endocrine Care Panel
This session is a must for adult and pediatric patients managing endocrine dysfunction due to McCune-Albright syndrome. FD patients shouldn’t tune out… one presenter will share cutting edge research on FD and pregnancy.
Confirmed Speakers: Michael Collins, Alison Boyce, Veronica Gomez-Lobo and Lauren Ruotolo.
Pain Management Panel
We know that pain is one of the most important topics for people living with FD/MAS. Learn about the bone therapies, psychological strategies and general palliative treatments that can help.
Confirmed Speakers: Daniel Handel, Alison Boyce, Jon Seskevich and Dylan Levine.
Orthopedic Care Panel
Hear from the experts on managing FD/MAS throughout the rest of the skeleton, including from an orthopedic surgeon who has FD himself.
Confirmed Speakers: Robert Stanton, Lynn Lindaman, and Scott Paul.
Patient Activism! Panel
What do we want? Progress! When do we want it? NOW! Patient community leaders share their sage wisdom on raising awareness, raising funds, changing public policy, and how to stay sane while making a difference.
Confirmed Speakers: Lauren Rachelle Cox, Skye Miu Steppe, Christina Schulz, Kelly Cohen, and Paul Melmeyer.
In addition to panels and meals, there was a space at the conference on Sunday for patients to get involved in research by joining the registry and learning about other ongoing research on FD/MAS. This room was sponsored by the Tier III Pipeline to Proposal project lead by a team of FD/MAS researchers and advocates. Read more about their project here.
The Fibrous Dysplasia Foundation expresses its sincerest thanks to the sponsors who made this event possible.
About FDF Patient & Family Conferences
Fibrous Dysplasia Foundation, Inc. works to improve the quality of life for individuals who have FD or MAS by providing a community of support for patients with FD/MAS and their family and friends where they can share their stories, trade ideas, experiences and viewpoints and obtain information about FD/MAS. Conferences are a critical component of the way we enact our mission.
FD Foundation conferences present the cutting edge of research by the scientists conducting it and the state of clinical practice by current practitioners in lay terms understandable by patients and those who support and care for them. Conferences held in 2007 and 2008 involved medical presentations on the following topics: the genetics and variability of disease symptoms for FD and MAS, orthopedic treatment, endocrine issues in adults and children, phosphate wasting, the use of bisphosphonates, and pain management, and craniofacial treatment. Time is provided for audience questions.
In general, attendees report conferences are: clearly organized and relevant, speakers work at the right level – their presentations are not too simplified yet still understandable, presenters clearly answer questions, the price is very affordable and the food is great, and the conference setting, particularly meals, offer a great opportunity to meet others with similar problems.
Recordings of that conferences are available in our Video/Podcast Library.
In years when the Fibrous Dysplasia Foundation does not hold a conference, it sometimes offers webinars on specific topics. The first webinar was offered December 2010, by Dr. Michael Collins. Sign up for our mailing list to register with us and ensure you are informed about conference and webinar opportunities.