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WELCOME TO THE FIBROUS DYSPLASIA FOUNDATION!

 

BREAKING NEWS: 

 

Fibrous Dysplasia Foundation Patient & Family Conference

October 25 & 26 2014

NYU LANGONE MEDICAL FACILITIES, 550 1st Ave. at 31st St., NY, NY


PLEASE REGISTER at https://www.surveymonkey.com/s/FJHMWNT

by Oct 10th

 

The 2014 Fibrous Dysplasia Foundation Patient and Family Conference will be an exciting and informative meeting. We have lined up the best medical professionals with the most experience with FD/MAS and cherubism. Roundtables will also be formed to promote informal discussions around participants’ primary interest topics on the registration form.

Bring questions for the presenters during Q and A.  Bring your X-rays if you have individual questions-- Doctors will be available to view your X-rays on their laptops.

PRESENTATION TOPICS: Orthopedic Surgical Issues (Adult and Pediatric), Endocrine Issues/MAS, Craniofacial Issues, Pain Management, Research/Medical, Treatments on the Horizon, Physical Rehabilitation, Cherubism, Nutrition, FD Registry, Personal Journeys with FD

TENTATIVE ROSTER (TO BE SUPPLEMENTED)

Charles 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 Lee - Orthopedic Surgeon, Columbia Presbyterian Hospital

Dr. Jeffrey Kim - Craniofacial Specialist, Medstar Georgetown Hospital

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. Scott Paul - Physical Rehabilitation, National Institute of Health

Dr. Lynn Lindaman - Orthopedic Surgeon’s Personal Journey with FD

Lisa Heral, RN - FD Registry Coordinator

Lauren Ruotolo Personal Journey with FD/MAS

Dr. Amanda Konradi FD Board Member/FD Registry

 

SCHEDULE:

Sat. October 25th

8:30 - 9:15  Registeration

9:30 - 5:45  Presentations (incl Q & As), Lunch & Roundtables

6:00 - 8:00 Informal Dinner

Sun. October 26th

8:30 - 9:00  Breakfast

9:00 - 1:00 Presentations (incl Q & As), Roundtables

1:00 - 2:30 Lunch, Mix & Mingle

 

Registration Fees: $25.00 per individual/$40.00 per family

Meals (Optional): $40.00 per individual (includes breakfast and lunch Sat. & Sun and dinner Sat. night.) FD Foundation is subsidizing these meals which cost approximately $75.00.

 

Note there are last minute NYC hotel deals for under $200 on the internet and cheaper hotels in Long Island City which is short commute to the conference!

 

PLEASE REGISTER at https://www.surveymonkey.com/s/FJHMWNT

by October 10th

Questions: email cindirb@aol.com or dan.levine@trueorthinc.com

 

 

 

 

 

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.

 

 

STAY INFORMED!

        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

Cherubism Overview

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.

Conferences

Presentation Downloads


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.

Research Opportunities

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.

Advocacy

Fundraising

Updated 04/05/2014. 
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