The National Organization for Rare Disorders (NORD), an independent advocacy organization for patients and families affected by rare diseases, recently published its latest addition to the NORD’s Physician Guide series, the new NORD Physician Guide to Cutaneous T-Cell Lymphoma (CTCL).
The free online resource promotes physician awareness and early diagnosis of CTCL, a group of rare diseases that causes an abnormal buildup of malignant T-cells in skin which can lead to rashes, plaques, and tumors.
All of NORD’s guides are written and reviewed by specialized medical professionals to cover signs and symptoms, diagnosis, treatment, investigational therapies, standard therapies, and other related topics about specific rare diseases.
“People who have rare diseases often go for many years without a diagnosis,” Marsha Lanes, a genetic counselor in NORD’s Educational Initiatives Department, said in a press release. “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, the director of the University of Pittsburgh’s Cutaneous Lymphoma Program and an assistant professor of dermatology.
“Eczema and even some cases of psoriasis may look very similar to mycosis fungoides, the most common type of cutaneous T-cell lymphomas,” 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.”
The new guide includes information about the disease and relevant resource information from organizations that include the Cutaneous Lymphoma Foundation.
NORD began as a small group of patient advocates who formed a coalition to mobilize support to pass the Orphan Drug Act of 1983, a U.S. law that facilitates the development of drugs for rare diseases.
Today, NORD’s free physician guide series covers many topics. Included are guides for mitochondrial myopathies; paroxysmal nocturnal hemoglobinuria (PNH); atypical hemolytic uremic syndrome (aHUS); and nontuberculous mycobacterial lung disease.
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