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As stated, Roussy-Levy is related to Charcot-Marie-Tooth. This site has a link that lists support groups in major cities all over the United States.
This site has general information on Roussy-Levy Syndrome as well as links to support groups.
Muscular Dystrophy Association
This site offers information of Charcot-Marie-Tooth variants and links for parents to pose questions to physicians.
Central website for links to other websites about the disease.