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104

Marinesco-Sjogren Syndrome website A new website is available to provide support to families affected by Marinesco-Sjogren Syndrome (MSS) (ataxia, cataracts, very small stature, and cognitive

yinger@...
Jan 24, 2001
#104
 

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103

Web page Hey you guys, Cady's web page is updated, go check it out! Http://wvnvm.wvnet.edu:80/~ncb00582. Leslie

ncb00582@...
Oct 3, 2000
#103
 

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102

Re: [iem-family] 21 y/o with PKU

    susan.l.rump@...
    Jul 2, 2000
    #102
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    101

    Re: [iem-family] 21 y/o with PKU You're thinking of Children's Hospital next door. We treat adults who "outgrow" CHOP's Metabolism Department at the Hospital of the University of Pennsylvania

    Christopher Friedrich MD PhD
    Jul 1, 2000
    #101
     

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    100

    Re: [iem-family] 21 y/o with PKU ... Hello - are you aware we have a clinic for adults with PKU in the Medicine Department at the Hospital of the University of Pennsylvania? ... Dear Dr

    susan.l.rump@...
    Jul 1, 2000
    #100
     

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    99

    Re: [iem-family] 21 y/o with PKU Dr. Freidrich: Thank you so much for making me aware of your adult PKU clinic. My son, Daniel, has been attending St. Christopher's Hospital for Children's

    MacPku@...
    Jul 1, 2000
    #99
     

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    98

    21 y/o with PKU Hello - are you aware we have a clinic for adults with PKU in the Medicine Department at the Hospital of the University of Pennsylvania? Chris Friedrich, M.D.,

    Christopher Friedrich MD PhD
    Jul 1, 2000
    #98
     

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    97

    Re: [iem-family] MCAD Hi - are you aware of the FOD support group? Their website is http://www.fodsupport.org/ . They also have a

    LeeKatMN@...
    Jun 29, 2000
    #97
     

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    96

    MCAD I have a foster daughter that has MCAD. Medium Chain ACYL CoA Dehydrogenase Deficiency. Is there anyone with this disorder that cold offer some advice? She is

    Clint Kimble
    Jun 29, 2000
    #96
     

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    95

    Re: [iem-family] Mother on a mission PAULO & RUTH VILLELA RUTINHA@... I HAVE TWO KIDS WITH CLASSIC MSUD

    Rutinha@...
    Jun 29, 2000
    #95
     

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    94

    Re: [iem-family] Mother on a mission Our daughter has homocystinuria, another metabolic disorder in which a protein component - in this case methionine cannot be metabolized. There are many

    Therese Waters
    Jun 29, 2000
    #94
     

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    93

    Re: [iem-family] Mother on a mission Dear Crystal - My name is Kim and I have a 6 1/2 year-old son with Isovaleric Acidemia (IVA). I know that your son has MSUD but if you want to talk to someone

    Kimandluke@...
    Jun 28, 2000
    #93
     

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    92

    Re: [iem-family] Mother on a mission Crystal: I am the co-administrator of a support listserv for the birth defect known as PKU (phenylketonuria) which is very similar in treatment to that of

    MacPku@...
    Jun 28, 2000
    #92
     

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    91

    Mother on a mission ... My name is Crystal Clack. My son has been diagnosed with Classic Maple Syrup Urine Disease. I have alot of questions and I need someone to talk to. We live

    1TravelSavingsAlert@...
    Jun 28, 2000
    #91
     

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    90

    Re: [iem-family] peculiar odors Thank you Paul for this info. In regards to a "clinical diagnosis" she only has AS by symptoms, genetically all tests for AS have been negative(FISH,

    TESSABUG@...
    Jun 28, 2000
    #90
     
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