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July 23, 2015

TOPIC: Featured News, Advocacy

Rare Action™ Road Tour, Atlanta, GA

Posted by Tim Boyd

Atlanta Blog

Greetings from Atlanta, Georgia.

I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force (a NORD member organization).  As a NORD State Ambassador, Beth is hoping to advance provider education for Syringomyelia and all… Read More

July 23, 2015

TOPIC: Uncategorized

NORD Issues Statement on FDA’s New Associate Director for Rare Diseases

Posted by Jennifer Huron

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s announcement that Jonathan C. Goldsmith, MD, FACP, will lead the Rare Diseases Program in the Center for Drug Evaluation and Research (CDER) Office of New Drugs at the Food and Drug Administration (FDA).

NORD congratulates Jonathan C. Goldsmith,… Read More

July 20, 2015

TOPIC: Uncategorized

Member Spotlight: WSCTF

Posted by Lisa Sencen

Worldwide Syringomyelia & Chiari Task Force’s purpose is to educate the world about Syringomyelia. The organization provides those affected, with hope by advocating research for a cure. As the organization grows, it will provide direct assistance to those diagnosed with Syringomyelia by providing durable medical equipment to all who qualify by having a letter from their treating physician confirming diagnosis & disability; and… Read More

July 17, 2015

TOPIC: Advocacy

Ensuring Access to Clinical Trials Act of 2015 Passes in the U.S. Senate

Posted by Jennifer Huron

CapitolA win for the rare disease community

Yesterday, the U.S. Senate passed the Ensuring Access to Clinical Trials Act of 2015 (S 139), which NORD has supported.  The bill would make permanent the Improving Access to Clinical Trials Act of 2009 (IACT). Without Congressional action, it is scheduled to expire in October 2015…. Read More

July 16, 2015

TOPIC: Patient Stories

Guest Blog: A Parent Advocate & Author Discusses Courage

Posted by Jennifer Huron

By David Cry, Guest Blogger

David CryCourage. Strength in the face of pain or grief. A tenet I have experienced on many occasions as the lead of The Adrenoleukodystrophy (ALD) Foundation. I have heard it in the words of mothers whose sons have been diagnosed with this fatal illness. Witnessed it in the… Read More