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PRESS RELEASES

 

PDFs of press releases may be obtained by clicking on the links below: 

Fibrous Dysplasia & MAS Awareness Ribbon - September 20, 2012

FD Foundation GRDR Press Release - July 2, 2012

GRDR Goals and Announcement - June 18, 2012

Orphanet PR  - May 24, 2012

Texts of press releases follow.

All inks in press releases are live.

The Fibrous Dysplasia Foundation is pleased to announce the development of a disease awareness ribbon for Fibrous Dysplasia / McCune Albright Syndrome!

About the design: An old medical saying is “If you hear hoof-beats, think "horse." This means, that the most likely explanation is often the right one.  But rare diseases are the zebras of medicine, a point that medicine and the public needs to grasp.  The National Disease Day organization in the US has promoted the use of zebra stripes and this feature of our ribbon connects the FD/MAS community to patients, caregivers and advocates for the other rare diseases who struggle along-side us.   Zebra stripes can be any two colors.  White is symbolic of bone disease. Orange features prominently in the logos of the Fibrous Dysplasia  Foundation, National Organization for Rare Disorders and other international organizations working to promote the welfare of FD and MAS patients.  Purple references chronic pain, an invisible feature of FD that needs attention among medical personnel and the broader community.  Yellow is symbolic of optimism and hope. This is what motivates patients to persist in their efforts to live full lives and motivates patients, caregivers, medical professionals and supporters to bring attention to and work for a cure for the rare diseases of FD and MAS.

Ownership: Lauren Foster, a 20 year old FD patient was the inspiration for and energy behind this ribbon design. As the creator of the image, she legally owns the copyright. She hopes that it can become an international symbol linking patients, caregivers, clinicians and organizations that work on FD and MAS. 

Terms of use: The image may be freely added to the websites and Facebook pages of FD/MAS related supporters and organizations. The image may also be replicated for personal
use (make your own t-shirt for Rare Disease Day,  bake a unique birthday cake for your beloved).  Sale of goods bearing the image is restricted to raise funds for the Fibrous Dysplasia Foundation, Inc. Contact the FD Foundation for jpg versions of the ribbon logo, the FD Foundation logo or copies of the Foundation brochure for fundraising purposes.

Awareness Gear: Watch the Fibrous Dysplasia Foundation website for information about obtaining gear with the awareness ribbon insignia.

The Office of Rare Diseases Research (ORDR), National Center for Advancing

Translational Sciences (NCATS), at the US National Institutes of Health

has selected the

Fibrous Dysplasia Foundation

to participate in the 2 year pilot of the

 Global Rare Diseases Patient Registry and Data Repository (GRDR).

 

 

The aim of the Fibrous Dsyplasia Foundation is to use this exceptional opportunity to create a tool through which patients and the international scientific community can pool information regarding this rare disease, in order to collectively advance knowledge, and ultimately improve the quality of life of affected individuals and their families.

 

The Fibrous Dysplasia Foundation Registry Working group will soon begin to develop patient and physician questionnaires.  Progress reports will be posted on the FD Foundation website: www.fibrousdysplasia.org

 

FD and MAS patients are encouraged to share this news with their physicians.  Physicians are encouraged to share this news with their patients.  Medical and device corporations are encouraged to contact the FD Foundation to discuss ways to become involved: info@fibrousdysplasia.org 


This is a major success for the FD Foundation!  We thank all the physicians, researchers and patients who have committed time and energy to developing the relationships and organizational systems that made us a viable competitor. 

 

Together we can improve diagnosis and treatment and search for a cure.

 

For additional information about the GRDR: http://www.grdr.info/


The Fibrous Dysplasia Foundation is pleased to announce the publication of
Proceedings from the 1st International Scientific Conference on Fibrous Dysplasia of Bone/McCune Albright Syndrome, and Cherubism
Bethesda, MD, USA, 3-5 October 2010

in

Orphanet Journal of Rare Diseases
Volume 7 Supplement 1
Thursday, 24th May 2012
 
http://www.ojrd.com/supplements/7/S1

 

S1 http://www.ojrd.com/content/7/S1/S1
The surgical management of fibrous dysplasia of bone
Robert P Stanton, Ernesto Ippolito, Dempsey Springfield, Lynn Lindaman, Shlomo Wientroub and Arabella Leet

S2 http://www.ojrd.com/content/7/S1/S2
Clinical guidelines for the management of craniofacial fibrous dysplasia
JS Lee, EJ FitzGibbon, YR Chen, HJ Kim, LR Lustig, SO Akintoye, MT Collins and LB Kaban

S3 http://www.ojrd.com/content/7/S1/S3
Pathophysiology and medical treatment of pain in fibrous dysplasia of bone
Roland D Chapurlat, Deborah Gensburger, Juan M Jimenez-Andrade, Joseph R Ghilardi, Marilyn Kelly and Patrick Mantyh

S4 http://www.ojrd.com/content/7/S1/S4
McCune-Albright syndrome and the extraskeletal manifestations of fibrous dysplasia
Michael T Collins, Frederick R Singer and Erica Eugster

S5 http://www.ojrd.com/content/7/S1/S5
The role of SH3BP2 in the pathophysiology of cherubism
Ernst J Reichenberger, Michael A Levine, Bjorn R Olsen, Maria E Papadaki and Steven A Lietman

S6 http://www.ojrd.com/content/7/S1/S6
Cherubism: best clinical practice
Maria E Papadaki, Steven A Lietman, Michael A Levine, Bjorn R Olsen, Leonard B Kaban and Ernst J Reichenberger



Support for the conference and publication provided by the Fibrous Dysplasia Foundation, National Institute of Dental and Craniofacial Research and Office of Rare Diseases - National Institutes of Health, and an unrestricted grant from Zimmer Inc.

 

Please make a DONATION to support further research and meetings.
Page last updates 9/20/2012.
Please report problems with this page to info@fibrousdysplasia.org.

 

 

  
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