Ecco una selezione di informazioni da pazienti e professionisti per capire meglio Glut 1.
Glut 1 risorse
Glut 1 Domande Frequenti
Ecco alcune delle FAQ e le loro risposte:
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. ...
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...
Glut 1 Gruppi di Pazienti
Ci sono organizzazioni di pazienti che hanno esperienza e competenza a riguardo delle Glut 1 malattie. Sono sostenitori di questo sito. Contattali per ulteriori informazioni sulle loro attività.
Vedi tutti i gruppi di pazienti
-
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.
Contatta The Remi Savioz Glut1 Foundation -
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.
Contatta Milestones for Children -
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.
Contatta The Glut1 Deficiency Foundation -
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.
Contatta The Colleen Giblin Foundation -
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.
Contatta Matthew’s Friends GLOBAL -
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.
Contatta The Charlie Foundation -
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.
Contatta The Child Brain Foundation
Glut 1 Documenti
Risorse, documenti e informazioni dettagliate su Glut 1. In questa sezione puoi scaricare opuscoli , richiedere documenti da stampare o trovare link utili.
-
FAST FACTS ABOUT GLUT1 DS
Summary of mechanisms and terms involved in Glut 1 Deficiency syndrome in lay language.
Autorer/Fondazione: Remi Savioz Glut1 Foundation
Anno di pubblicazione: 2012, inglese
-
2011 Conference Summary Report
2011 Glut1 Deficiency Conference New Orleans, Louisiana July 14-15, 2011
Autorer/Fondazione: Glut 1 Deficiency Foundation
Anno di pubblicazione: 2011, inglese
-
Glut1 Deficiency Foundation: Reaching for a Bright Future
Shedding light on Glut1.
Autorer/Fondazione: The Glut1 Deficiency Foundation
Anno di pubblicazione: 2011, inglese
-
Glenna's Interview on GLUT1
PDF file
Autorer/Fondazione: The Glut 1 Deficiency Foundation
Anno di pubblicazione: 2011, inglese
-
Winter 2011: Keto News
A publication for the ketogenic diet from The Charlie Foundation
Autorer/Fondazione: Allie
Anno di pubblicazione: 2011, inglese
Glut 1 Articoli
Articoli più recenti:
Orphanet: Encefalopatia da deficit di GLUT1 (2006)
La sindrome da deficit del trasportatore del glucosio tipo 1 è caratterizzata da encefalopatia, che si manifesta con epilessia infantile refrattaria al trattamento, riduzione della crescita ...
Glut 1 Eventi
Eventi più recenti:
-
Maggio 2012
-
6th European Conference on Rare Diseases & Orphan Products (ECRD 2012)
From 23 to 25 maggio 2012
MCE Conference Centre in Brussels, Belgium
-
Giugno 2012
-
European Human Genetics Conference 2012
From 23 to 26 giugno 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.
-
Luglio 2012
-
3rd Annual Glut1 Deficiency Conference
On 12 luglio 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!
-
Settembre 2012
-
AAN (Annual American Academy of Neurology 2012 Conference)
On 16 settembre 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!
-
Third International Symposium: Dietary Therapies for Epilepsy & Other Neurological Disorders
From 19 to 22 settembre 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


