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Archives for: October 1st, 2020

Nebraska Medicaid Expansion Is Progress for Rare Disease Patients, Highlights Critical Need to Support Medicaid During COVID-19

Written by Corinne Alberts on October 1, 2020

Today, Nebraska’s Medicaid expansion begins to take effect. This milestone—two years in the making—means that thousands more low-income people, including many who have a rare disease, now have access to health care coverage.

Nebraska is the latest in the long line of successful ballot initiatives to expand Medicaid. Since the… Read More

Newborn Screening: The HCP Perspective on the Importance of Confirmatory Testing and Collaboration

Written by Valaree DonFrancesco on September 29, 2020

SCREENING NEWBORNS FOR RARE DISEASES: THE IMPORTANCE OF CONFIRMATORY TESTING AND COLLABORATION

By José Abdenur, MD and Rebekah Bressi, CGC

”Newborn screening is one of the most successful public health initiatives that allows physicians to prevent the disability or death of thousands of children every year. Providing a timely diagnosis… Read More

Update on NORD’s Recent Advocacy Work on COVID-19 for the Rare Community

Written by Valaree DonFrancesco on April 20, 2020

In this time of crisis and uncertainty, NORD’s policy team has been working to pursue policies at the federal and state levels to address COVID-19 related concerns critical to the rare disease community. 

Protecting Access to Necessary Medical Treatment During the Pandemic

Social distancing is critical for slowing… Read More

Rare Disease Day 2020 Advocacy Events Recap

Written by Valaree DonFrancesco on March 13, 2020

In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare Disease Day, driving the annual campaign in the states, hosting advocacy events across the country and bringing the rare disease… Read More

NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Written by Valaree DonFrancesco on February 11, 2020

Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations and industry innovators will be honored for their outstanding work for the rare disease community on May 15, 2020, in… Read More