WELCOME TO THE FIBROUS DYSPLASIA FOUNDATION!
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Fibrous Dysplasia Foundation, Inc. (The FD Foundation) is a worldwide, not-for-profit, charitable organization of volunteers whose mission is to provide information, advocacy and support for patients, medical professionals and the general public and promote research for diagnosis, treatment and a cure for Fibrous Dysplasia (FD) and McCune-Albright's Syndrome (MAS), Cherubism and related diseases. Our goal is to improve the quality of life for affected individuals and their families.
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STAY INFORMED!
Go to the Foundation News side bar or click on links to pages about the: 2010 Scientific Meeting, Patient Conferences, Advocacy, Fundraising and our development of a Registry/Biorepository and investment in research!
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Make a donation!
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PREPARATIONS ARE UNDERWAY FOR THE
5TH FD FOUNDATION PATIENT & FAMILY CONFERENCE ON FD, MAS & CHERUBISM
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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.
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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.
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Presentations by Clinical and Scientific Experts about endocrine issues and FD & MAS, orthopedic issues and FD, managing craniofacial FD, pain management, and cherubism.
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Round-table Discussions for patients and parents to share questions, insights and strategies.
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Informal Group Dinner and Breakfast (extra charge).
Go to CONFERENCES for more information.
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| $20,000 SCIENTIFIC CONFERENCE CAMPAIGN |
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With NIH, the FD Foundation is hosting an International Scientific Conference with over 25 experts in FD, MAS and cherubism to establish standards of care, future research goals and determine parameters for a patient registry / biorepository. The results will be published in open source journals, which will allow all patients and all physicians worldwide to download the publications free of charge. This is an extremely important conference which will move us closer to a cure and better treatments.
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ANNOUNCING A NEW GRAND PARENT MATCH TO HELP US MEET OUR TARGET! !
Thanks to our many generous donors we are happy to announce that we have raised over $12,000. One grandparent is offering to match all FUTURE donations to meet our $20,000 goal. This means your donation will be doubled! Please donate toward this very important cause and note grandparents match.
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Here’s what your donations can do:
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$2,000
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pays for the airfare for an Italian biologist investigating a gene therapy for FD
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$1,000
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rents vans to get all 20+ scientists to and from the airport and to an off-site meeting location where they can meet our supporters from Capitol Hill
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$600
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pays for airfare for a US cranio-facial specialist who treats FD and Cherubism
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$200
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provides professional quality audio recording of speakers
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$100
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purchases breakfast for a pediatric orthopedist, an adult orthopedist, two molecular biologists, a geneticist and a plastic surgeon
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$25
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buys sandwiches for a pathologist, a stem cell specialist and a top surgeon from Taiwan
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