Home: Publications: Forum Archives: MFF Forum, edition 1
What We're Doing

CTCL-MF On-line Patient Support/Information Listserv
The CTCL-MF on-line patient support/information listserv was started in 1996 as a vehicle for patients, friends and families to share their experiences and information about mycosis fungoides, Sézary syndrome and other related diseases. There are now more than 750 members from 20 different countries who participate. If you want more information about this listserv, please contact us.

Directions to join the listserv:

• E-mail: listserv@listserv.ACOR.org
• Leave subject area blank
• In message area, type: subscribe CTCL-MF type your name

The CTCL-MF list is one of over 100 cancer support listservs sponsored by the Association of Cancer Online Resources (ACOR). Information on other cancer related listservs may be found at: http://www.acor.org.

Projects Underway

PUVA Resource Directory: Doreen Hudson has undertaken the project of putting together a directory of PUVA providers. This will help patients identify a physician or facility close to home for their treatments.

Lymphomatoid Papulosis Pamphlet: Nikki Thomason has been the guiding force behind the Mycosis Fungoides Foundation's effort to publish a Q&A pamphlet for patients. Any contributions designated LyP are tax-deductible and will be used specifically for this project.

Mycosis Fungoides Foundation Represented in CARRA Program
The National Cancer Institute (NCI) created the Consumer Advocates in Research and Related Activities (CARRA) program to encourage people affected by cancer to provide their viewpoint and ideas directly to NCI staff to enable the NCI to incorporate this perspective into its programs and activities. They have selected 150 consumer advocates that represent a variety of cancer types, age groups and ethnic groups from across the nation. Judy Jones of the Mycosis Fungoides Foundation was appointed as a founding CARRA member for a three-year term that began in September. In addition to participating in NCI activities, CARRA members will represent the opinions of their groups and play critical roles as two-way information links between their own communities and constituencies and the NCI.

Mycosis Fungoides Fast Facts
The Mycosis Fungoides Foundation has a pamphlet available, "Mycosis Fungoides Fast Facts." This is a non- clinical pamphlet that answers some basic patient questions. A copy is available on our website at: www.MFFoundation.org. If you would like a copy sent to you, please contact us. These are also available for physicians to give to patients who are first diagnosed with this disease.

 

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