Annie Kennedy's Blog – April 2017 Archive (6)

ACTION ALERT: ­Immediate Action Needed – Revised AHCA Bill Threatens Duchenne Community’s Access to Health Care Coverage

The current version of American Health Care Act (AHCA) directly threatens essential health benefits (EHBs), Medicaid eligibility and funding, and vital health care protections for our Duchenne community. 


I wish there was a way to sugar coat this. Find the silver lining. See the glass as…


Added by Annie Kennedy on April 28, 2017 at 9:30am — No Comments

Members of Congress Re-Introduce ABLE Improvement Bills

Great news – The ABLE program enhancements have been re-introduced in Congress and are gaining support. This package of bills include improvements to the original ABLE program that directly impact our community, here’s how:

On April 4th, a bi-partisan group of Members of Congress, including Senators Richard Burr (R-NC), Bob Casey (D-PA),…


Added by Annie Kennedy on April 14, 2017 at 9:00pm — No Comments

PPMD Joins Letter to Protect Medicaid

In late March, PPMD joined 87 organizations to issue a letter calling on Congress to take a hard look at the likely significant and life-threatening consequences of the American Health Care Act on millions of…


Added by Annie Kennedy on April 13, 2017 at 9:30pm — No Comments

PPMD Signs Appropriation Letter to Fund Newborn Screening

PPMD is proud to sign on to letters sent both to the Senate and the House asking that they provide at least $29.8 million to the Centers for Disease Control and Prevention’s (CDC) Newborn Screening Quality Assurance Program (NSQAP) and at least $19.9 million to the Health Resources and Services Administration’s (HRSA) Heritable Disorders…


Added by Annie Kennedy on April 12, 2017 at 9:00pm — No Comments

PPMD's Duchenne Drug Development Roundtable Meeting Series, Part 3: Clinical Trial Readiness from the Viewpoint of Clinicians and Infrastructure

Accelerating trials. Protecting our robust therapeutic pipeline. Ensure as many hits on goal as we can.

Priorities shared by all of us.

And to achieve this, PPMD has convened our industry partners through our Duchenne Drug Development Roundtable and held a series of small, targeted meetings this winter, each…


Added by Annie Kennedy on April 5, 2017 at 11:00am — No Comments

PPMD Working with FDA to Plan Landmark Pediatric Advisory Committee Meeting to Improve Clinical Trial Experience

Later this spring – likely on or about May 18 – FDA’s Pediatric Advisory Committee will convene to consider the issue of allowing in-dwelling ports in Sarepta’s Essence trial.

Once again, our community is at a pivotal moment in our history where we can affect change and improve the clinical trial experience for our…


Added by Annie Kennedy on April 5, 2017 at 10:00am — No Comments

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