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September 8, 2015

TOPIC: Featured News

The Sturge-Weber Foundation

Posted by Lisa Sencen

Established in 1987, the Sturge-Weber Foundation is dedicated to acting as a clearinghouse for information on all aspects of port wine stain conditions and Sturge-Weber syndrome, and offering support to all interested parties. The group seeks to educate the medical community, government agencies, and the general public; promote the funding of ongoing medical research; and establish a registry of… Read More

September 8, 2015

TOPIC: Patients & Members, Events

Rare Disease Artists’ Work Traveling Globe to Raise Awareness

Posted by Jennifer Huron

cystinosisThe Cystinosis Research Network (CRN), a 501(c)(3) charitable organization and NORD member, created the first-ever “Dream, Achieve, Inspire” art exhibit prepared entirely by patients with cystinosis, a rare, genetic-metabolic disease. Paintings, poems, sculptures, dance, and photography from 107 individuals with cystinosis covering 30 countries came together under Exhibit Chairperson, Katie Larimore.

The art exhibit opened… Read More

September 4, 2015

TOPIC: Press Releases

NORD Issues Statement on NIH Appointment of New Director for Office of Rare Diseases Research

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 the announcement that Petra Kaufmann, M.D., M.Sc., has been named director of the Office of Rare Diseases Research (ORDR), part of… Read More