Communauté Glut 1

Voici une sélection d'informations en provenance des malades & des professionnels de santé pour mieux comprendre Glut 1.

Ressource Glut 1

Questions fréquemment posées pour Glut 1

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What is Glucose Transporter Deficiency Syndrome?

Glucose transporter type 1 deficiency syndrome (GLUT1DS) is a defect in carrying glucose into the brain. Glucose is the essential fuel for the brain and is provided from carbohydrates in the diet. ...

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What is the ketogenic diet?

The ketogenic diet is currently the only known treatment for children with Glucose transporter 1 deficiency syndrome. It is also used on a short-term basis to treat other types of seizure disorders...

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Groupes de Patients Glut 1

Voici les associations de patients qui ont une expérience et une expertise dans les maladies Glut 1. Ils sont partenaires dans la creation de ce site. Vous pouvez les contacter pour plus d'information à propos de leur champ d'action.

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  • The Remi Savioz Glut1 Foundation

    The Remi Savioz Glut1 Foundation is a 501(C)(3) non-profit public charity dedicated to the mission of finding a cure or treatment for the rare brain disease Glucose Transporter Type 1 Deficiency Syndrome by way of fundraising, creating an awareness of the rare disease and providing educational information for children and families affected by Glut1 DS, as well as the medical community. The Remi Savioz Glut1 Foundation has broadened its mission by funding projects associated with all modes of Glucose Transporter Research. Developing a better understanding of the functionality of Glucose Transporters is necessary in finding a cure and treatments for Glut1 DS. This research will impact a wide variety of treatment options for other diseases such as Epilepsy, Cancers and Diabetes. The Foundation will continue to work towards its mission until no child remains without a treatment, cure, proper diagnosis or whose lives are improved and enriched by our efforts.

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  • Milestones for Children

    At Milestones for Children, our mission is to raise funds to support finding cures for rare pediatric diseases -- one disease at a time. The first disease we have chosen to support is Glucose Transporter Deficiency Syndrome (Glut1 DS), a serious pediatric neurological condition. Our goal is to fund necessary research to help diagnose and find a cure for Glut1 DS.

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  • The Glut1 Deficiency Foundation

    The Glut1 Deficiency Foundation is a volunteer, non-profit family organization dedicated to: educating others about Glut1 Deficiency by creating a forum for sharing, support, experiences, resources, and information between patients, families, and healthcare professionals, and increasing awareness of and advocacy for Glut1 Deficiency. * supporting and funding researchers as they work for a cure.

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  • The Colleen Giblin Foundation

    The story began in 1985 when four-year-old Colleen Giblin died from an inoperable brain tumor. In the final stages of young Colleen's battle with cancer, her parents, Paul and Vickie Giblin, made the decision to devote themselves to sparing other children, and their parents, from the same anguish that they were experiencing. Through the pain of their experience, the Giblin's determined that the clear path to change lay in finding new treatments and cures for children with neurological diseases. With that goal in mind, they instituted a foundation designed to promote research at Columbia Presbyterian Medical Center, one of the nation's leading research hospitals.

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  • Matthew’s Friends GLOBAL

    Matthew's Friends believes all those with drug resistant epilepsy should be able to gain access to these dietary treatments and be supplied with the correct information so that a properly informed decision can be made. Matthew’s Friends will support all those involved with these treatments and help further research and development into the use of Dietary Treatments for Epilepsy.

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  • The Charlie Foundation

    The Charlie Foundation was established in 1994 in order to raise awareness about the ketogenic diet as a treatment for childhood epilepsy. The modern success of the diet has led to new demands on the medical community. In order to meet these demands, the Charlie Foundation has expanded its priorities to include educational programs for dietitians and neurologists as well as support for clinicians and researchers working to perfect its administration and discover its mechanisms.

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  • The Child Brain Foundation

    The Child Brain Foundation supports scientific research for the benefit of infants and children afflicted by –or at risk of suffering from- any neurological disease. The Foundation is a non-profit institution that abides to a single steering principle: the advancement of children’s well being through the facilitation of communication and collaboration among scientists, physicians, families and humanitarian supporters and advocates across the world.

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Documents Glut 1

Ressources, documents et informations détaillées sur Glut 1. Dans cette section, vous pouvez télécharger des brochures, demander des documents imprimés ou trouver des liens utiles.

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Articles Glut 1

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Orphanet: Syndrome du déficit en transporteur de glucose de type 1 (2006)

Le syndrome du déficit en transporteur de glucose de type 1 (GLUT-1) est une encéphalopathie caractérisée par une épilepsie de l'enfant résistant au tr...

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Evènements Glut 1

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  • Mai 2012

  • 6th European Conference on Rare Diseases & Orphan Products (ECRD 2012)

    From 23 to 25 mai 2012

    MCE Conference Centre in Brussels, Belgium

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  • Juin 2012

  • European Human Genetics Conference 2012

    From 23 to 26 juin 2012

    Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe. The Society will encourage and seek to integrate research and its translation into clinical benefits and professional and public education in all areas of human genetics.

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  • Juillet 2012

  • 3rd Annual Glut1 Deficiency Conference

    On 12 juillet 2012

    We are pleased to present the 4th Annual Glut1 Deficiency Conference in beautiful downtown Indianapolis! Our location at the Embassy Suites (Group Code: GLT) is within walking distance to many downtown attractions, including the Indianapolis Zoo, Indianapolis Children's Museum and Circle Centre Mall, to name a few. We are working on our slate of presenters this year, including a preliminary commitment from Dr. Joerg Klepper from Germany. He has offered to give us his report on the European experience of Glut1 Deficiency. In addition to Dr. Klepper, we will have representatives from both Columbia University-Glut1 Studies and UT Southwestern, along with local experts covering topics relevant to the Glut1 community. Our annual conference gives you the opportunity to meet new friends, share your experiences with old friends and learn what is new in the world of Glut1 Deficiency, as we all take steps in hopes of a cure. We look forward to seeing you in attendance!

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  • Septembre 2012

  • AAN (Annual American Academy of Neurology 2012 Conference)

    On 16 septembre 2012

    An exhibit booth at the 2012 Annual American Academy of Neurology’s Conference. The mission of the AAN: “The foundation exists to further the goals of the American Academy of Neurology by supporting education and research in neurology, and is dedicated to improving patient care, quality of life and public understanding of brain and other neurological disorders.” We will also be funding a project to coincide with the Conference!

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  • Third International Symposium: Dietary Therapies for Epilepsy & Other Neurological Disorders

    From 19 to 22 septembre 2012

    Join us for this international health and science event at the beautiful Chicago Hilton Indian Lakes Resort designed by Frank Lloyd Wright. Learn about the latest in research and clinical practice in the use of ketogenic therapies for brain disorders. Keynote Speaker: Gary Taubes, author of Good Calories, Bad Calories Special Guest: Meryl Streep

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Actualités de la communauté Glut 1

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