GENERAL INFORMATION

There several ways that the FD Foundation practices advocacy on behalf of persons with Fibrous Dysplasia, McCune-Albright Syndrome and Cherubism.

The FD Foundation involves itself in efforts to educate federal and state officials about the 

♦  the importance of funding basic research
♦  the need to mandate health insurance coverage for the diverse symptoms of these diseases 
♦  why small clinical trials are critical to test medications and new treatment regimes

The FD Foundation engages with with corporations that create and manufacture devices and medications used by persons with Fibrous Dysplasia, McCune-Albright Syndrome and Cherubism or scientific investigators with the goal to

♦  maintain the availability of all medical resources
♦  expand the scope of research and design 
♦  secure corporate sponsorship for activities within the mission of the FD Foundation

FD Foundation spreads information to physicians who are most likely to confront individuals with FD, MAS and Cherubism to educate them about

♦  current research based standards of diagnosis and treatment

♦  FD Foundation resources for patients, including conferences

♦  the physician referral database

VOLUNTEERS NEEDED

♦  The FD Foundation has an affiliation with the National Organization for Rare Disorders (NORD) and the Kakkis Everyday Life Foundation. These advocacy groups follow legislation and seek to involve rare disease groups and their members in increasing our access to reseach funds, speeding up clinical trials, and shaping FDA policy.  The FD Foundation needs a volunteer to monitor emails coming from these organizations and develop press releases that can be posted on this website or released as a blog.

♦  The FD Foundation seeks patients and caregivers willing to testify before legislative bodies or speak to the media.

Please send an email to info@fibrousdysplasia.org if you are interested in either opportunity.

SUCCESSES

March 17, 2010 – The FD Foundation gains 13 Champions

March 22, 2010 Federal Health Care Legislation passes with features relevant to FD, MAS and Cherubism

♦  On September 23, 2010 – insurance agencies may no longer exclude children with preexisting conditions from coverage on a family policy

♦  January 2014 – insurance agencies may no longer exclude adults with preexisting conditions from coverage

♦  Effective immediately, independent children up to age 26 will be able to stay on their parents' family policy.

♦  Kids' eligibility for the popular CHIP (Children's Health Insurance Program), which helps lower-income families, must be maintained by states.

♦  The bill would bolster the existing Medicare prescription-drug benefit by addressing part of its “doughnut hole” problem.

April 2010 – The FD Foundation joins the National Organization of Rare Diseases.

April 2010A - FD Foundation Board member facilitates a relationship between an orthopedic device manufacturer and the NIH to further her work on tissue engineering.

 Last update 10/29/2012.
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