WELCOME TO THE FIBROUS DYSPLASIA FOUNDATION!
2014 Fibrous Dysplasia Foundation
Patient & Family Conference
was a TERRIFIC SUCCESS!
Video of lectures will be available soon!
(Watch this space for instructions how to access.)
Charles W. Harles - President, Fibrous Dysplasia Foundation
Dr. Michael Collins - Chief,Skeletal Clinical Studies Unit, NIH
Dr. Robert Stanton - Orthopedic Surgeon, Nemours Children's Hospital
Dr. Francis Y. Lee - Orthopedic Surgeon, Columbia Presbyterian Hospital
Dr. H. Jeffrey Kim - Craniofacial Specialist, Medstar Georgetown Hospital
Dr. Andrea Burke - Clinical Research Fellow NIDCR, NIH
Dr. Daniel Handel - Chief Paliative Medicine, Denver Health Medical Center
Dr. Alison Boyce - Endocrinology/Medical Management, Main Hospital, D.C.
Dr. Jennifer Wolkin Licensed Psychologist, NYU Langone Medical Center.
Dr. Pamela Robey - Chief, Craniofacial and Skeletal Diseases Branch, NIH
Dr. Charles Kim - Integrative Medical Practice, NYU School of Medicine
Dr. Scott Paul - Physical Rehabilitation, National Institute of Health
Dr. Lynn Lindaman - Orthopedic Surgeon’s Personal Journey with FD
Lauren Ruotolo Personal Journey with FD/MAS
FD Foundation announces patient registry agreement with the National Organization For Rare Disorders (NORD)
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.
BREAKING NEWS: The FD Foundation has invested in Survey Monkey technology and will be seeking regular feedback from patients and family members who visit this site.
BREAKING NEWS: Charlie Harles, President of the FD Foundation, and pain researcher Dr. Patrick Mantyh are interviewed by Dr. Paul Christo about bone pain.
Click to download the Podcast.
Find out about Volunteer Opportunities!
Make a donation!
|Click these links for rapidly changing information about: Press Releases, Fundraising and development of the FD & MAS Patient Registry!
Navigate this site using the left side bar or the Quick Links Below!
EDUCATION: The FD Foundation provides a variety of sources of information about FD,
MAS and Cherubism, to further awareness of these diseases:
Fibrous Dysplasia Overview
McCune Albright Syndrome Overview
Diagnosis and Treatment of FD & MAS
FAQ About FD
FAQ About FD Treatment
Living with FD, MAS and Cherubism
FD FOUNDATION BROCHURE
FD FOUNDATION BROCHURE - SPANISH
The FD Foundation hosts conferences for patients and caregivers/advocates where medical practitioners present the cutting edge of research and clinical practice concerning FD and MAS in a format understandable by the general public.
SUPPORT: The FD Foundation offers a community of people familiar with FD, MAS
and Cherubism who are available to patients, their friends and families and medical
professionals through email. The regular meetings also provide a chance for the
geographically dispersed community to come together.
Become a member
Participate in the on-line support group
Physician Referral Database
Make a donation
RESEARCH: The FD Foundation promotes awareness among bone specialists and other researchers about the need for research into FD/MAS and Cherubism. The FD Foundation assists researchers on FD/MAS and Cherubism in finding participants for on-going research and will also provide research support when funds are available.
See also our LIBRARY OF ARTICLES
ADVOCACY: The FD Foundation advocates fundraising on an individual, corporate and
government level in order to promote research into diagnoses, treatments and, ultimately, a
cure for FD/MAS.
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