Community & Reference |
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The Biennial FSH Society International Patient and Researcher Network Day
The FSH Society is a world leader in combating muscular dystrophy. It increases awareness and understanding and conducts research and education on the most prevalent muscular dystrophy in adults, called facioscapulohumeral muscular dystrophy (FSHD). The FSH Society has brought together more than 4,000 FSHD-affected families through education, patient network meetings, support group meetings, peer-support, and advocacy. Through the Society patients have found ways to be useful to medical and clinical researchers working on their disease. The support patients receive from one another through sharing their common experience is invaluable and immeasurable. One major way the Society fosters communication is with its biennial patient-researcher conference. The 2012 International Patient and Researcher Network Meeting will be held at the Atlanta Marriott Marquis, 265 Peachtree Center Avenue NE, Atlanta, Georgia 30303 on Saturday-Sunday, June 30-July 1, 2012. This will be the twelfth FSHD patient-researcher day. The previous 2010 International Patient and Researcher Network Meeting was held at the Paris and Bally’s Hotels in Las Vegas, Nevada, July 30-August 1, 2010. The intent of these meetings is to bring together patients, researchers, and clinicians to find insights and facilitate breakthroughs through dialogue. INFORMATION Location: Atlanta Marriott Marquis, 265 Peachtree Center Avenue NE, Atlanta, Georgia 30303 The International Patient and Researcher Network Meeting, sponsored by the FSH Society, is a partnership among patients, families, clinicians and scientists. The June-July 2012 meeting in Atlanta will include lectures by and question and answer sessions with leaders in the field of FSHD, including reports from major clinical centers and research centers, and educational sessions on breathing and respiration, and exercise and physical therapy. Popular breakout sessions include topics that participants have requested as well as the interests of teenagers and young adults. Tentative program can be found PDF format HERE or MS-Word format HERE. Overnight accommodations are available at Atlanta Marriott Marquis. The FSH Society has a special conference rate of at $109 per night (single or double occupancy), plus taxes. The hotel guarantees 25 accessible rooms, 9 with roll-in showers. For the best selection of accessible rooms and showers, please make your reservations early. The closing date for the Society’s block of rooms is Thursday, June 7. For reservations, call (800) 266-9432 or (506) 474-2009, or reserve online by clicking HERE or going to the following URL
https://resweb.passkey.com/Resweb.do?mode=welcome_ei_new&eventID=6304468 Please download, complete and return 2012 International Patient and Researcher Network Meeting registration form. Form available in Abobe Acrobat PDF or MS-Word formats. 2012 IPRN Meeting registration form PDF HERE FSH Society, Inc., 64 Grove Street, Watertown, Massachusetts 02472 Confirmation for the meeting will be mailed/e-mailed to you upon receipt of this form. Please mail this form or register online at www.fshsociety.org by June 1. Credit card or checks payable to “FSH Society.” TEXT SIZE
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FSH Society, Inc. • 450 Bedford Street • Lexington, MA 02420 • Tel: 781 301-6060 • Fax: 781 862-1116
The Biennial FSHD International Patient and Researcher Network Meeting