Primary cutaneous peripheral T-cell lymphoma not otherwise specified

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Primary cutaneous peripheral T-cell lymphoma not otherwise specified

Synonyms: Primary cutaneous peripheral T-cell lymphoma NOS | Primary cutaneous unspecified peripheral T-cell lymphoma

An extremely rare primary cutaneous T-cell lymphoma disorder characterized by solitary or multifocal and diffuse cutaneous lesions ranging from tumor-like patches plaques papules nodules and/or erythroderma located on any area of the body which rapidly progress and may become ulcerated and/or infected. Systemic involvement may be associated.

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.

Reference: Access aggregated data from Orphanet at Orphadata.

Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version December 2023

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Primary cutaneous peripheral T-cell lymphoma not otherwise specified?

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Advocacy Organizations

Cutaneous Lymphoma Foundation

Judy Jones, Judith Shea, and Dr. Stuart Lessin, frustrated with the lack of reliable information about cutaneous lymphomas, started the Mycosis Fungoides Foundation (now the Cutaneous Lymphoma Foundation) in 1998 The Cutaneous Lymphoma Foundation is an independent, non-profit patient advocacy organization dedicated to supporting every person with cutaneous lymphoma by promoting awareness and education, advancing patient care and facilitating research.

My Faulty Gene

My Faulty Gene is a nonprofit organization which provides information and assistance to any individual whose family medical history suggests genetic testing might be helpful in identifying an increased risk of disease due to a genetic mutation. We believe that everyone in need of genetic testing should have access to it.

My Little Sunshine Foundation

My Little Sunshine is a non-profit foundation dedicated to educating people about the importance of fertility preservation and making fertility resources accessible to all.

SALUS

Educate and provide resources to POC with Rare Cancers

Youth And Women for Opportunities Uganda-YWOU

Our mission supports Rare, orphan and undiagnosed diseases diagnosis, care and treatment, education, awareness and empowering health care professionals and patients care takers of rare, orphan and undiagnosed diseases arena in Uganda, build capacity and bridge lack of clinical knowledge and experience and provide search/quest for diagnostic laboratories, I advocate for changes in laws, practices

Youth and Women for Opportunities Uganda-YWOU

Youth and Women for Opportunities-YWOU an organization that we represent is patient organization re-presentative, patient and institution and individual capacity builder supporting PLWRD’s to obtain diagnosis, treatment and drugs for those suffering consequences of being undiagnosed or misdiagnosed and lack treatment and those who lack precise diagnosis for rare, orphan and undiagnosed diseases preventing PLWRD’s accessing the most adapted care, treatment or surgery, have delayed access to the most appropriate care, treatment or surgery

Clinical Trials

For a list of clinical trials in this disease area, please click here.