SOURCE: National Organization for Rare Disorders

National Organization for Rare Disorders

October 26, 2016 09:19 ET

NORD Publishes Physician Guide to Cutaneous T-Cell Lymphoma

National Organization for Rare Disorders Publishes Guide to Promote Diagnosis and Treatment for Patients

WASHINGTON, DC--(Marketwired - October 26, 2016) - As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders has published The NORD Physician Guide to Cutaneous T-Cell Lymphoma (CTCL). This new resource is available free online to medical professionals 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. The NORD physician guides are developed in collaboration with medical experts and can be accessed at or

"People who have rare diseases often go for many years without a diagnosis," said Marsha Lanes, MS, CGC, a genetic counselor in NORD's Educational Initiatives Department. "The purpose of NORD's free online physician guides is to reduce the time to diagnosis and encourage optimal treatment for patients with little-known and little-understood rare diseases."

The NORD Physician Guide to Cutaneous T-Cell Lymphoma (CTCL) was developed in collaboration with Oleg E. Akilov, MD, PhD, assistant professor of dermatology and director of the Cutaneous Lymphoma Program at the University of Pittsburgh School of Medicine. CTCLs are a group of rare disorders characterized by abnormal accumulation of malignant T-cells in the skin, potentially resulting in the development of rashes, plaques and tumors.

"Eczema and even some cases of psoriasis may look very similar to mycosis fungoides, the most common type of cutaneous T-cell lymphomas," Dr. Akilov said. "It is important to be aware of these similarities and to be ready to think about cutaneous lymphoma when a patient with 'common dermatosis' does not respond to regular treatments."

In addition to information about the disease, the new guide includes information about resources for physicians and patients such as the Cutaneous Lymphoma Foundation, which is one of NORD's 250 member organizations.

NORD established its physician guide series as part of a broader strategic initiative to promote earlier diagnosis and state-of-the-art care for all people with rare diseases. Each online guide is written or reviewed by a medical professional with expertise on the topic. The guides cover signs and symptoms, diagnosis, treatment, investigational therapies, standard therapies, and related topics.

Other recent guides in the series include The NORD Physician Guide to Mitochondrial Myopathies, The NORD Physician Guide to Paroxysmal Nocturnal Hemoglobinuria (PNH), The NORD Physician Guide to Atypical Hemolytic Uremic Syndrome (aHUS) and The NORD Physician Guide to Nontuberculous Mycobacterial Lung Disease.

The NORD Physician Guide to Cutaneous T-Cell Lymphoma was made possible by an educational grant from Therakos, now a part of Mallinckrodt Pharmaceuticals.

About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most. NORD represents more than 250 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.

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