Glut 1 comunidad

El síndrome por deficiencia del transportador de glucosa de tipo 1 (GLUT1) es un trastorno genético que altera el metabolismo del cerebro.

Child Neurology Society Conference por Allie publicado hace 2 meses


Glut1 Deficiency Foundation

Exposition Summary Report

Child Neurology Society Conference

October 26-29, 2011

Savannah, Georgia
This was an excellent conference for the Glut1 Deficiency Foundation to participate in. Our booth was well located and we were warmly received by everyone. The folks representing the Child Neurology Society were particularly friendly and accommodat...

Glut1 en Noruega por mummy_of_two publicado hace 4 meses

En Noruega hay 13 personas conocidas con Glut 1 y ¡dos de ellos son míos! Soy la mamá de dos hijas adultas que han sido incorrectamente diagnosticadas durante 34 años. Un mes atrás recibí una llamada telefónica del médico de mis hijas que me dijo que ambas tenían un nuevo diagnóstico llamado Gut 1. Y, ¡que lo podemos tratar!

Me sentía como que estaba trepando el monte Everest de un solo viaj...

Glut1 Deficiency Foundation por Glut1 Deficiency Foundation publicado hace 5 meses


Some of the facts and faces of Glut1 Deficiency (G1D, Glucose Transporter Type1 Deficiency Syndrome, Glut1 DS, De Vivo Disease). Produced by the Glut1 Deficiency Foundation. www.g1dfoundation.org

Dylan por rdc-team publicado hace 6 meses

Dylan tiene una sonrisa contagiosa y llega a muchos corazones. Dylan nació el 26 de abril de 2004, a tiempo completo, vía cesárea. A las 10 semanas, Dylan tuvo un ataque febril generalizado que le duró más de cinco minutos. Se lo llevó al Hospital de Niños de Los Angeles, donde le practicaron una punción lumbar, una tomografía del cerebro y análisis de laboratorio. No había etiología para los s...

Grupos de ayuda a pacientes

  • The Remi Savioz Glut1 Foundation

  • Milestones for Children

  • The Glut1 Deficiency Foundation

  • The Colleen Giblin Foundation

  • Matthew’s Friends GLOBAL

  • The Charlie Foundation

  • The Child Brain Foundation

Filtros

Actividad Reciente de Glut 1

  • -

    Question by email from Italy...
    topic, publicado hace 5 días

    mostrar transcripción

    Hi,

    I just received the following text in Italian and had it translated to English using our translation service.
    If you have any response, you can post it here, and I will make sure the person who wrote the email can access the text and have it translated into Italian.

    Thanks,
    Rob

    ...

  • -

    Glut1 story from Scotland
    topic, publicado hace alrededor de 1 mes

    mostrar transcripción

    HI,
    Wanted to share this great article about a great family helping educate and spread awareness:

    http://www.arbroathherald.co.uk/news/local-headlines/mum_highlights_need_1_2107400

    Thanks to the Watsons!

  • -

    Glut1 DS in Greece
    topic, publicado hace alrededor de 1 mes

    mostrar transcripción

    Hi Allie,
    it' s me again!
    we' ve already have an excellent neuro and a dietician that began the ketogenic diet. But my brother's baby its the only baby in Greece and I would like another opinion. He drinks in bottle Ketocal (ratio 4,5:1, 2ml liquigel and superamine with carnitine). He started...

  • -

    FAST FACTS ABOUT GLUT1 DS
    document, publicado hace alrededor de 1 mes

    mostrar transcripción

    Summary of mechanisms and terms involved in Glut 1 Deficiency syndrome in lay language.

  • -

    Sanford Rare Disease Day Symposium - February 25th
    topic, publicado hace alrededor de 1 mes

    mostrar transcripción

    Thanks to the Wienk family, the Glut1 Deficiency Foundation will have an exhibit booth at Sanford's 2nd annual Rare Disease Day Symposium on February 25th. Visit the link below to find out more and to see an agenda of the day's discussions:

    http://www.sanfordresearch.org/ClassLibrary/Page/Ima...

  • -

    ❤ Some1 with Glut1 Rare Disease Day Campaign
    topic, publicado hace alrededor de 1 mes

    mostrar transcripción

    Hello,

    The Glut1 Deficiency Foundation is hosting a ❤Some1 with Glut1 campaign in conjunction with Rare Disease Day. You can read more about the campaign by following the link below:

    https://g1dfnd.ejoinme.org/?tabid=333204

    If you are interested in participating, please contact Glen...

  • -

    Glut 1 Foundation Winter Newsletter
    topic, publicado hace 2 meses

    mostrar transcripción

    Online here:
    http://www.g1dfoundation.org/g1dfoundation.org/Home_files/winter%20g1d%20news%20copy%20web.pdf

  • -

    Question sent via e-mail about the ketogenic diet
    topic, publicado hace 3 meses

    mostrar transcripción

    Dear Glut1 community-

    We received this question via e-mail: Other treatment Ketogenic Diet? Alternative medicine? Food supplements? My 17 year old girl, diagnosed at age 14, could not stand the diet, too morally difficult.

    Any responses would be greatly appreciated.

    FYI: The original q...

  • -

    Glut1 Deficiency TV story
    topic, publicado hace 3 meses

    mostrar transcripción

    Hello,
    I wanted to share this great story about a Glut1 Deficiency family and the ketogenic diet. Thank you to the Williams family for helping raise awareness and educate others!

    http://fox4kc.com/2011/12/15/unusual-high-fat-diet-keeps-metro-boy-healthy/

  • -

    Question from another member about the ketogenic diet
    topic, publicado hace 3 meses

    mostrar transcripción

    "A doubt has arisen us in relation to foods that can be supplied in ketogenic diet. As you know this diet restricts the amount of carbohydrates that patients can eat , the question is ... if there are prohibited foods that can be calculated mathematically, logically in minimum amount, can not be ...