Registration will open very soon…
Our next Patient & Family conference will be November 4th and 5th, 2017 in Silver Spring, Maryland.
When registration opens, you’ll be able to find links to registration pages and our hotel block on this page.
The 2017 Patient & Family Conference is going to be filled with great information and opportunities to meet other families. Stay tuned!
|Research||Learn what scientist know and don’t know about FD/MAS, and what that means about progress toward better treatments.||Michael Collins, Alison Boyce, Pamela Robey, Amanda Konradi, and Cindi Brandt Levin|
|Cranio Care||FD in the skull is common, but managing it can be complicated. Learn what you need to know to make decisions about your care.||Andrea Burke, Janice Lee, and Edmond Fitzgibbon.|
|Orthopedic Care||Hear from the experts on managing FD/MAS throughout the rest of the skeleton, including from an orthopedic surgeon who has FD himself.||Robert Stanton, Lynn Lindaman, and Scott Paul.|
|Endocrine Care||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.||Michael Collins, Alison Boyce, and Veronica Gomez-Lobo.|
|Pain Management||We know that pain is one of the most important topics for people living with FD/MAS. Learn about the bone therapies and general strategies that can help.||Daniel Handel, Alison Boyce|
|Patient Activism!||What do we want? Progress! When do we want it? NOW! Patient community leaders share their sage wisdom on raising awareness, raising funds, and changing public policy, and how to stay sane while making a difference.||Lauren Rachel Foster, Skye Miu Steppe, Kelly Cohen, Paul Melmeyer, and Nina Gorbach.|
There are two registration options: in-person and digital.
In-person registration is the traditional format. It includes in-person admission to the conference, and conference meals. It’s a tried and true way to learn a lot, and make meaningful connections with other patients and families.
Digital registration is a new, experimental format that we’re trying for the first time. Digital registration will include access to a livestream video of the conference, and optional video chatrooms with other digital registrants during conference meal breaks. This is a good option if you can’t make it, but would like to participate in the conference in some way. We can’t guarantee the quality of the livestream and chatrooms, but we hope that this new option will make the conference more accessible to those who can’t attend the conference for other reasons.
About 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 by the layman, 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.
The most recent conference was held in New York City at the NYU Langone Medical Center, October 25-26, 2014. Recordings of that conference and previous conferences are available in our Video/Podcast Library.
We are pleased to announce that our next Patient & Family conference will be November 4th and 5th, 2017 in Silver Spring, Maryland. Consider attending in person or registering to participate online.
In years when the Fibrous Dysplasia Foundation does not hold a conference, it will offer 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.