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 October 2024
Newly diagnosed with
Primary cutaneous peripheral T-cell lymphoma not otherwise specified?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
Care-for-Rare America Inc
To establish a global alliance in order to identify the genetic causes of rare diseases and develop effective treatments, following a three-stage approach: recognize, understand, cure.
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.
Help Hope Live
Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. These efforts play a critical role in helping clients access the care and equipment they need to heal, live, and thrive. Unlock a powerful and safe way to raise funds for medical needs with Help Hope Live. They provide one-on-one fundraising guidance, a customizable Campaign Page, bill pay support, and additional benefits based on their 501(c)(3) nonprofit status.
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
Don't see your organization here. Let us know here.
Clinical Trials
For a list of clinical trials in this disease area, please click here.