Written by Christina Jensen on May 1, 2018
Have you heard of a patient or natural history registry but have no idea what it was? Interested in starting a registry for your patient population but not sure where to start?
We will cover these topics and more in an educational webinar on May 1. NORD’s Research Programs Manager, Suzanne… Read More
Written by Jennifer Huron on March 31, 2017
Research study is open to participants worldwide to advance understanding and treatments for rare disease causing blistering that may be accompanied by severe pain, itching, burning, and stinging.
Sacramento, CA and Washington, D.C., March 31, 2017—The International Pemphigus &… Read More
Written by Jennifer Huron on December 23, 2016
Research study is open to participants worldwide to advance understanding and treatments for rare disease causing non-syndromic intellectual disability ranging from mild to severe with attention deficits, impulsivity, and/or mood disorders. Seventy to eighty percent of children with SYNGAP1 also have some type of epilepsy and the SYNGAP1 gene has… Read More
Written by Christina Jensen on December 20, 2016
“When you are faced with a difficult health challenge, you need to be able to turn to a trusted source for support and advice – much like many people battling rare diseases have turned to NORD in the past 33 years.
NORD will keep fighting to eradicate the… Read More
Written by Jennifer Huron on November 3, 2016
Washington, D.C., November 3, 2016—The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The new study, the FD/MAS Patient Registry, creates a platform for patients… Read More