Floor Vote for Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) may be coming this week

The House is scheduled to vote this week – as early as Tuesday – on the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281). Attached is the coalition letter, signed by the EveryLife Foundation as well as many other Rare Disease groups, urging House leadership to schedule this important vote. This bipartisan legislation will help ensure that infants continue to receive comprehensive, effective and lifesaving screenings for genetic and endocrine conditions soon after birth.

NBSSLRA(HR1281) House Vote Letter

Rare Disease Report features the OPEN ACT (Orphan Product Extensions Now Accelerating Cures and Treatments)

The June 3rd edition of The Rare Disease Report has an article detailing the goals of the OPEN ACT, which aims to help rare disease patients through “rare purposing”. The OPEN ACT  (Orphan Product Extensions Now Accelerating Cures & Treatments) and was originally introduced by EveryLife Foundation President, Dr Emil Kakkis, at the World Orphan Drug Congress in April.
Read more

Sign on to Support the Undiagnosed Diseases Research & Collaboration Network (HR 1591)

The “Network” created by H.R. 1591 will help reduce the length of time and number of physicians it currently takes to diagnose patients with a rare disease by creating a professional physician collaboration network and providing a means to collect and analyze information on undiagnosed cases.  Add your organization to the list of supporters by contacting Heather Long at cnhlong@att.net

Read more

New Op-Ed With Details on 21st Century Cures Initiative

by Rep. Fred Upton,U.S. Congressman representing Michigan’s 6th District &  Rep. Diana DeGette, Chief Deputy Whip

Originally published by The Huffington Post on May 6th:  Talk to any American adolescent and it quickly becomes clear that keeping pace with 21st century technology is a constant challenge. But staying on top of today’s technology goes far beyond trending hashtags and Instagram likes; it presents a unique opportunity to bring researchers, innovators, caregivers, and patients together in a new way that advances our collective understanding of disease and how we combat it.

Read more

Rep. Eshoo introduces bill that would grant $150 Billion in new health research funding

Politico is reporting that Rep. Anna Eshoo, one of the Democrats racing to lead the party on the powerful House Energy and Commerce Committee next year, introduced a bill on Thursday to grant $150 billion in new health research funding.

The bill would set up a mandatory trust fund for the National Institutes of Health and other health programs, including the CDC. It would not be subject to the annual appropriations process and would authorize the $150 billion over 10 years.

Read more

The Gabriella Miller Kids First Research Act is Signed into Law

The Millers of Virginia, family of 10-year-old cancer victim, Gabriella, watched today as President Obama signed into law a new pediatric disease research act.

The new law will increase research funding for pediatric cancer by $126 million over 10 years. The funds are being redirected into the Common Fund at the National Institutes of Health from a reserve used to pay for presidential party conventions.

Click here to read the entire story

BREAKING NEWS: SGR Deal Includes Two of MODDERN Cures Provisions

Patients advocated for MODDERN Cures at RDLA’s Lobby Day last month.  Our advocacy efforts helped move this important legislation:
Last night, Senate Majority Leader Harry Reid and House Speaker John Boehner agreed on a one-year patch to prevent a drastic cut in physician Medicare payments. The bill, which temporarily suspends the sustainable growth rate (SGR), includes two provisions from MODDERN related to the development of diagnostic tests.

Read more

RDLA Conference Call/Webinar March 2014

Our monthly conference call/webinar took place on March 20th.  You can find the agenda & slides from the call below:

Read more

Read About the Legislation Featured at Lobby Day

During Rare Disease Week 2014 in Washington D.C. over 160 rare disease advocates lobbied for 3 main pieces of legislation and asked their legislators to join the Rare Disease Legislative Caucus.

Read more

Action Alert for Organizations: Sign on to support the MODDERN Cures Act

U.S. Representative Leonard Lance (R-NJ) has introduced legislation that would “modernize our drug and diagnostics evaluation and regulatory network” – the MODDERN Cures Act, H.R. 3497.  The lead cosponsor is U.S. Representative Jay Inslee (D-WA).

Read more