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August 3, 2015

TOPIC: Featured News

Member Spotlight: CLOVES Syndrome Community

Posted by Lisa Sencen

The mission of CLOVES Syndrome Community (CSC) is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. Its vision is to have an improved quality of life for people with CLOVES syndrome.

1.) What does it mean to you personally to be a patient organization serving the rare community?

I started this organization back in 2009,… Read More

August 3, 2015

TOPIC: Uncategorized

Requests for Proposals

Posted by Lisa Sencen

The NORD Research Grant Program provides seed-money grants to academic scientists for scientific and/or clinical research. The hope is that these studies will ultimately lead to new diagnostics, treatments, and/or cures for rare diseases. NORD’s program provides grants for the study of diseases for which there are few other sources of funding. Grants provided through the NORD program are… Read More

July 30, 2015

TOPIC: Advocacy

NORD Files Amicus Brief to Protect Drug Development Incentives in the Orphan Drug Act

Posted by Jennifer Huron

Washington, D.C., July 30, 2015 – The National Organization for Rare Disorders (NORD) has filed an amicus brief in the D.C. Circuit of the U.S. Court of Appeals, stating that a recent Food and Drug Administration (FDA) decision has the potential to impede the development of new treatments to help patients with rare diseases. NORD is the leading… Read More

July 28, 2015

TOPIC: Featured News, Advocacy, Get Involved

Miss Iron County Supports Rare Disease Advocacy and Awareness

Posted by Lisa Sencen

Recently, NORD was happy to receive a Facebook message from a young woman named Angelia Benson. She expressed interest in using NORD’s logo in a parade as part of her competition to become Miss Utah.  We were thrilled to learn that Angelia, who is the reigning Miss Iron County Utah, was interested in rare diseases and in using her… Read More