NFormation is for persons who already have some understanding about NF1 and
are seeking answers to difficult questions about the disorder’s progress and treatment possibilities.
It is about providing existing, new and future information that will allow the reader to make
decisions about the NF1 syndrome or explore new alternatives. It is my take on NF1. At times,
some of the conclusions will be “Beyond the Obvious”.
Seven general types of information will be provided and or discussed:
• Updates of current information and potential NF1-related controversies.
• Summary overviews of the NF1 syndrome and the NF1 gene.
• Selected published literature.
• Links to alternative websites on NF1 and related topics or elements.
• The KSDT (Ketotifen Self-Determined Treatment of NF1 Neurofibromas) article.
• Invited commentaries.
• A fanciful, fictional character with NF1, “Nifty”.
All of the issues discussed in NFormation will be in general terms, without the intention to suggest or involve MEDICAL
DECISION-MAKING ON ANY LEVEL. Alternatively, there may be occasions where there is provided assistance with, or
contribution to EXECUTIVE DECISION-MAKING. For example, the issues at stake may be itemized without declaring or
implying any one of them is best-suited for a particular person.
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