Goverment Advocacy

 

Help Grow the Rare Disease Congressional Caucus
Help strengthen the rare disease community’s voice on Capitol Hill by encouraging your Member of Congress to join the Rare Disease Caucus, which aims to help bring public and Congressional awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry, and create opportunities to address roadblocks in access to an development of crucial treatments. The Rare Disease Legislative Advocates (RDLA) have a quick and easy way for you to you ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert. Simply insert your address and zipcode and it will generate a letter to your Member of Congress with a click of a button! Thanks RDLA! Check it out and encourage your Member of Congress to join today!

Learn More about the Patients Access to Treatments Act (PATA) H.R. 460
The bipartisan Patients’ Access to Treatments Act limits cost-sharing requirements applicable to medications in a specialty drug tier (typically Tier IV or higher) to the dollar amount applicable to drugs in a non-preferred brand drug tier (typically Tier III). It will enable patient access to treatments, reduce disability and constrain health care costs. Read more about the bill here.

  David, Marie, Senator Clinton and Congresswoman Carolyn McCarthy

David, Marie, Senator Clinton and Congresswoman Carolyn McCarthy

DMAF also coordinates the DBA Government Advocacy and Public Awareness campaign that works to educate US Members of Congress and federal government officials about the value of DBA research and patient outreach initiatives. The DBA Advocacy efforts, which were aided early on by a successful grassroots campaign from many DBA families across the country, have led to tremendous Congressional and Federal support that the entire DBA community can be proud of.

 

  Congressman Tim Bishop, Vice President Joe Biden, Marie & Manny Arturi

Congressman Tim Bishop, Vice President Joe Biden, Marie & Manny Arturi

We are excited to report that our partnership with our federal government supporters, including agencies within the US Department of Health and Human Services such as the National Institutes of Health (NIH), which coordinates government sponsored scientific research, and the Centers for Disease Control & Prevention (CDC), which work to improve public health and disease prevention, are resulting in substantial support for DBA scientific and clinical care initiatives. See our TOP 10 DBA Advancements To Know about our DBA effort.

Be an Advocate for DBA Research!

Learn how to write to your Member of Congress

The U.S. House of Representatives passed House Resolution 524, the DBA Bill, on October 15, 2007. This resolution recognized the significant value in supporting advanced DBA research and the broad benefits to understanding DBA’s links to other, more prevalent disease groups affecting Americans. H.Res. 524 noted that a primary example of the benefit of DBA research is the recent discovery that the ribosomal deficiency problem in DBA is linked to myelodysplastic syndrome (MDS), which has greatly expanded the understanding of DBA and opened up a new, exciting direction to this field of scientific research.

 

   David, Manny, Marie and Vic Hadfield in front of the U.S. Capitol Building

David, Manny, Marie and Vic Hadfield in front of the U.S. Capitol Building

   Marie and Manny Arturi with Congresswoman McCarthy

Marie and Manny Arturi with Congresswoman McCarthy

   David and Former Senator Arlen Specter

David and Former Senator Arlen Specter

   Manny, Marie, Vic Hadfield with Former Congressman Jack Quinn, R-NY

Manny, Marie, Vic Hadfield with Former Congressman Jack Quinn, R-NY