News from NORD

AWaRDS Study Examines Services for Adults With Rare Disorders


 

NORD is partnering with researchers at Oregon State University to conduct the first large-scale study of information and psychosocial support needs of people living with rare disorders. The purpose is to assess the needs and find similarities and differences across the spectrum of disorders. An online survey is now open for adults living with rare diseases. The principal investigator is Kathleen Bogart, PhD, Assistant Professor of Psychology at Oregon State. Co-investigator is Veronica Irvin, PhD, MPH, also of OSU.

Recommended Reading

NORD Encourages Observing Rare Disease Day in Hospitals and Academic Centers
Clinician Reviews
January 13 Is Deadline for NORD Rare Impact Award Nominations
Clinician Reviews
Major Three-Year Study of Undiagnosed Diseases Announced
Clinician Reviews
New Guidelines Published for Diagnosis and Management of Cystathionine Beta-Synthase Deficiency
Clinician Reviews
PSC Partners Seeking a Cure Launches Campaign to Distinguish Between PSC and PBC
Clinician Reviews
Hereditary Neuropathy Foundation Announces Newest Center of Excellence
Clinician Reviews
Nominate a Patient or Colleague for a NORD Rare Impact Award
Clinician Reviews
Join Others Around the World in Observing Rare Disease Day
Clinician Reviews
NORD Report Shows Majority of States Fall Short on Reducing Burden of Living With a Rare Disease
Clinician Reviews
Spinal CSF Leak Foundation Publishes Resources for Medical Professionals and Patients
Clinician Reviews