Written by Lisa Sencen on July 13, 2017
Washington, D.C., July 13, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the release of a revised draft of the Senate Leadership’s Better Care Reconciliation Act of 2017:
Senate Leadership today released a revised… Read More
Written by admin on December 18, 2014

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived, and when he… Read More
Written by on November 29, 2012
December 26 is the deadline for submitting comments on the proposed rule for Essential Health Benefits released recently by the Department of Health and Human Services (HHS). Essential Health Benefits are the core package of items and services that must be offered in individual and small group health plans under… Read More
Written by on November 28, 2012
On November 20, 2012, the Centers for Medicare and Medicaid Services (CMS) released the long-awaited proposed rules for health insurance market reforms and essential health benefits. These provisions of the Affordable Care Act (ACA) are meant to protect patients with pre-existing conditions from discrimination and provide protections against other insurance… Read More