Although CTCL is rare, there is a community of support for those who have it, and also for their family and friends. Connecting can provide another source of information and support. It may also give you a chance to help others and raise awareness in your community of CTCL skin symptoms.
Search this calendar to help find an event where you can connect with others living with CTCL skin symptoms.
Search your list of events. Use the drop-down menu below.
Learn more about these organizations and the events they hold below. Your doctor may also be able to connect you with local resources.
The CLF is an independent, nonprofit patient advocacy organization dedicated to supporting every person affected by cutaneous lymphoma by promoting awareness and education, advancing patient care, and fostering research for the best possible outcomes.
The LLS has a mission to cure leukemia, lymphoma, Hodgkin's disease, and myeloma, and improve the quality of life of patients and their families through research, ensuring access, and policy and advocacy support.
The LRF is the nation’s largest lymphoma-focused health organization devoted to improving care through education and support services and improving outcomes through investment in the most promising lymphoma research. Its mission is to eradicate lymphoma and serve all those impacted by this blood cancer.
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
IMPORTANT SAFETY INFORMATION
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DO NOT USE UVADEX IF:
The information below is about the use of UVADEX® (methoxsalen) Sterile Solution with the THERAKOS CELLEX® Photopheresis System for the treatment of skin conditions associated with Cutaneous T-Cell Lymphoma (CTCL) unresponsive to other types of treatment.
It is recommended that you discuss the therapy and your conditions with your doctor.
What is UVADEX (methoxsalen [meth-ox-sah-len]) Sterile Solution?
UVADEX (methoxsalen) Sterile Solution is used with the THERAKOS CELLEX Photopheresis System for the treatment of skin problems associated with CTCL in patients who have not responded to other types of treatment given by their doctor.
IMPORTANT SAFETY INFORMATION
DO NOT USE UVADEX IF:
WARNINGS
SIDE EFFECTS OF UVADEX
For the THERAKOS CELLEX Photopheresis System procedure:
What is the THERAKOS Photopheresis System procedure?
The THERAKOS CELLEX Photopheresis System procedure is a medical procedure in which blood from a patient is collected into a specialized machine that separates the white blood cells from the other blood components. The other blood components are returned to the patient and white blood cells are then treated with UVADEX, which makes them sensitive to ultraviolet light. The treated white blood cells are exposed to UVA irradiation inside the machine, and then returned to the patient. This medical procedure is used to treat skin problems associated with CTCL in patients who have not been responsive to other forms of treatment given by their doctor.
DO NOT UNDERGO THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE IF:
WARNINGS FOR THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE
SIDE EFFECTS OF THE THERAKOS PHOTOPHERESIS SYSTEM PROCEDURE
These are not all of the possible side effects of the THERAKOS Photopheresis System procedure.
Tell your doctor about any side effects that bother you, or that do not go away. Call your doctor or pharmacist for medical advice about side effects. You may report side effects to the FDA.
Call 1-800-FDA-1088 or visit www.fda.gov/medwatch. You may also report side effects by calling Mallinckrodt at 1-877-566-9466.
Please see the full Prescribing Information, including the BOXED WARNING, for UVADEX.