Patient Resources

There is information available on the internet, and if you wish, you may research the medical literature. We would like to caution you that some sources on the internet may contain misinformation. In addition, it is important that you read information carefully because it may not be relevant to your situation. For example, early stage Mycosis Fungoides differ greatly from late stage Mycosis Fungoides, so care must be taken when trying to understand your disease. Some publicly accessible resources are listed below.

Patient Support Organizations

  1. The Cutaneous Lymphoma Foundation is an independent, non-profit patient advocacy organization dedicated to supporting patients with cutaneous lymphomas by promoting awareness and education, advancing patient care, and facilitating research. Seewww.clfoundation.org
  2. The Lymphoma Research Foundation (LRF) is the nation's largest lymphoma-focused voluntary health organization devoted exclusively to funding lymphoma research and providing patients and healthcare professionals with critical information on the disease. LRF's mission is to eradicate lymphoma and serve those touched by the disease. Seewww.lymphoma.org
  3. The Patient Access Network Foundation is an independent, non-profit 501(c)(3) organization, unaffiliated with any of its donors, dedicated to assisting insured patients who cannot afford the out-of-pocket costs associated with their treatment needs. The Patient Access Network Foundation was created in response to a growing need to develop new solutions to assist the treatment of the underinsured. Our goal is to launch the most effective and patient-focused organization possible, focused on providing financial assistance to those patients. See www.patientaccessnetwork.org

Lymphoma Organization

  1. National Cancer Institute - The website has information on all sorts of cancers, including MF/SS. See www.nci.nih.gov. If you do not have access to the internet, you can also call 1-800-4-CANCER to speak to a representative of the NCI for assistance.
  2. On-going clinical trials. The NCI also has a website to search for clinical trials being conducted across the nation. See www.cancer.gov/clinical_trials/
  3. PubMed - Online website with search engines to research the medical literature. Seewww.ncbi.nlm.nih.gov/entrez/query.fcgi