SPRING 2010 UPDATES

 

March 17, 2010 – The FD Foundation gains 13 Champions on the Hill

Led by Senator John Kerry and Congressman James McGovern of Massachusetts, six senators and 7 congressional representatives sent a letter to the head of the NIH, Dr. Francis Collins in March, 2010, urging the NIH to continue funding research on rare diseases like FD/MAS. 

Signing Senators	Signing Congressional Representatives
John F. Kerry, (Massachusetts)	Jim McGovern (Massachusetts)
Daniel K. Inouye (Hawaii)	William D. Delahunt (Massachusetts)
Jeff Merkley (Oregon)	Richard E. Neal (Massachusetts)
Patty Murray (Washington)	John W. Olver (Massachusetts)
Jeanne Shaheen (New Hampshire)	Raul M. Girjalva (Arizona)
Ron Wyden, Senator (Oregon)	David Wu (Oregon)
	Bill Cassidy (Louisiana)

 

Click here to read the 2010 Congressional Support Letter to NIH.

Click here to read the NIH Director Francis Collins' reply to Senator John Kerry.

 

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 endorses the Kakkis Foundation

 

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

April 2010 -    A FD Foundation Board member facilitates a relationship between an orthopedic device manufacturer and the NIH, which will enable NIH scientist Dr. Pam Robey to further her work on tissue engineering.  

 

GENERAL INFORMATION ABOUT FD FOUNDATION ADVOCACY EFFORTS

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 need for legislation to

·         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 initiates contacts 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