The U.S. House of Representatives' Energy and Commerce Committee recently unanimously approved the 21st Century Cures Initiative, a bipartisan effort "to modernize and personalize health care, encourage greater innovation, support research, and streamline the system to deliver better, faster cures to more patients." You can read the press release here: http://energycommerce.house.gov/press-release/21st-century-cures-act-unanimously-approved
This is just one step -- an important one, though -- before this legislation can be enacted. Rare disease advocacy groups have been active in supporting it. You can read the official letters from Global Genes here: http://globalgenes.org/wp-content/uploads/2015/05/20150423CuresSupportLetter.pdf
and here: http://globalgenes.org/wp-content/uploads/2015/05/Please-Permanently-Reauthorize-the-Rare-Pediatric-Disease-PRV-Program-House.pdf
NORD (National Organization for Rare Disorders) issued a statement on the committee's vote, which you can read here: http://campaigns.rarediseases.us/t/ViewEmail/r/C47E8D149A5BBA7A2540EF23F30FEDED/2CF5BAF93C87CAE373767151F2435ACA
NORD has also sent a letter to the leadership of Congress, expressing its support of the Initiative. The XLH Network, along with over two hundred other similar organizations for other medical conditions, have co-signed the letter.
Stay tuned for more information as the bill continues through Congress.