To Top

August 3, 2015

TOPIC: Advocacy, Featured News, Sticky Posts for Homepage

Taking Rare Action™ on the Road

Posted by Tim Boyd
feat image

Over the next few weeks, I will be driving across the country to meet with NORD members and Rare Action Network™ advocates in their community. All told, I will be traversing over 4,000 miles, and spending time in 10 different states (my full itinerary can be found below).

In preparing for the trip, my colleagues and friends have… Read More

August 3, 2015

TOPIC: Featured News, Sticky Posts for Homepage

Member Spotlight: CLOVES Syndrome Community

Posted by Christina Jensen
FEAT image for Web

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 Christina Jensen
Requests for Proposals (1)

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

August 3, 2015

TOPIC: Sticky Posts for Homepage

Rare Disease of the Day

Posted by Christina Jensen
FEAT Image for WEB

Castleman’s disease is a rare disorder characterized by non-cancerous (benign) growths (tumors) that may develop in the lymph node tissue throughout the body (i.e., systemic disease). Most often, they occur in the chest, abdomen, and/or neck, but may also be found in the armpit (axilla), pelvis, and pancreas. Usually the growths represent abnormal enlargement of the lymph nodes normally… Read More