PATIENT CONFERENCES
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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.
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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.
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| 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. |
| Click on PODCASTS on the Top Menu to download audio recordings of conference presentations. |
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THE 5TH FIBROUS DYSPLASIA FOUNDATION
PATIENT & FAMILY CONFERENCE COMING SOON!!
Registration form and payment are due by September 24.
Click to access the 2010 Patient and Family Conference Registration Form.
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Dates: Saturday October 2 (afternoon) and Sunday October 3 (morning).
Location: Hyatt Regency - Bethesda, 7400 Wisconsin Ave, Bethesda, MD.
(301-657-1234). The Hyatt Regency is above the Bethesda METRO stop on the Red Line of the Washington subway system.
Cost: $25 per individual / $40 per family.
Anticipated Events: The FD Foundation will provide the same cutting edge information as we always have, but in a new format to encourage more interaction among attendees.
· Presentations by Clinical and Scientific Experts about endocrine issues and FD & MAS, orthopedic issues and FD, managing craniofacial FD, pain management, and cherubism.
· Round-table Discussions for patients and parents to share questions, insights and strategies
· Informal Group Dinner and Breakfast (extra charge)
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HOTELS: Anyone attending the Patient and Family Conference will need to make their own hotel reservations. We realize that the room rates at the Hyatt Regency are quite high so you may wish to explore other cheaper nearby options. All are within a short walk of the Hyatt Regency:
· Marriott Residence Inn - 7335 Wisconsin Ave., Bethesda, MD - (301) 718-0200
· Hilton Garden Inn - 7301 Waverly Street, (301)654-8111
· American Inn -8130 Wisconsin Ave. (301)656-9300
· Doubletree Bethesda, 8120 Wisconsin Ave (301) 652-2000
· Clarion Inn, 8400 Wisconsin Ave (301) 256-3477
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FOOD: The FD Foundation will provide drinks and snacks on Saturday afternoon and Sunday morning. We will also provide a simple continental breakfast on Sunday morning. There are also many excellent restaurants in all price ranges within three or four blocks of the Hyatt Regency.
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Questions? Email info@fibrousdysplasia.org
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FUTURE CONFERENCES
The Fibrous Dysplasia Foundation is shifting to a 2 year conference cycle. The next in-person conference is scheduled for the fall of 2010. Check back at this site for information about webinar presentations under development. Click on CONTACT US to become a member of the FD Foundation to ensure you are informed about the 2010 conference.
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WEBINARS
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. Click on CONTACT US to register with us to ensure you are informed about webinar oportunities.
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HOW TO OBTAIN PAST CONFERENCE PRESENTATIONS
Click on the PODCAST button or go to the Top Menu of the website to download presentations from the 2007 and 2008 Conferences. A limited number of DVDs remain from the 2006 conference. Click on CONTACT US to request a DVD recording from 2006.
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