Nov. 29, 2018
Posted by Laura Mullen
Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Post-Transplant Lymphoproliferative Disease (PTLD) in its Rare Disease Database. This new resource is available free online to individuals around the world.
As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides educational resources for patients, caregivers and medical professionals. Disease-specific reports are developed by the NORD editorial team in collaboration with independent medical experts.
“People who have rare diseases often have difficulty finding accurate and easy-to-understand information about their condition,” said Marsha Lanes, MS, CGC, a genetic counselor and medical editor in NORD’s Educational Initiatives Department. “The purpose of NORD’s free Rare Disease Database reports is to provide information and resources to help those who may be dealing with little-known and misunderstood medical conditions.”
The PTLD report was developed with assistance from Thomas M. Habermann, MD, of the Division of Hematology, Department of Medicine, Mayo Clinic. All NORD reports are either written or reviewed by independent medical experts. This new report was made possible by a donation from Atara Biotherapeutics. NORD and the independent medical experts who support its work are solely responsible for the content of the database.
PTLD is a rare complication of solid organ and hematopoietic stem cell transplant. People who receive these transplants are treated with drugs that suppress the activity of the immune system, leaving them at heightened risk for developing infections and, in some people, post-transplant lymphoproliferative disorder. PTLD can result in a mild, non-cancerous overgrowth of an organ or a cancerous, life-threatening form of lymphoma.
In most instances, PTLD is associated with the Epstein-Barr virus, a common virus that does not usually cause problems in people with normal-functioning immune systems. Following a transplant, when the immune system is suppressed, a dormant Epstein-Barr virus may be reactivated or a new infection with the virus may occur.
While specific signs and symptoms can vary greatly from person to person, PTLD can often have a rapid and severe development, and disease may be widespread throughout the body. Early diagnosis and prompt treatment of PTLD is extremely important.
The Rare Disease Database is one of many educational resources NORD provides for patients, caregivers, medical professionals, students and the public. The database was first established shortly after NORD was founded in 1983 and is used by millions of people around the world. It provides expert-reviewed information on rare diseases in patient-friendly language and currently covers more than 1,200 rare diseases. New reports are added on an ongoing basis.