Support association Glukosetransporter(GLUT1)-Defekt e.V.
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Description of patient organisation
The non-profit support association Glukosetransporter(GLUT1)-Defekt e.V., abbreviated as Glut1 e.V., was founded in 2002 and represents the interests of people affected by Glucose Transporter (Glut1) Deficiency, also known as GLUT1 Deficiency or Glut1 Deficiency Syndrome (G1DS). This rare, genetically caused metabolic disorder affects the cerebral energy metabolism and was first described in 1991 by Dr. de Vivo in the USA. The brain’s energy supply is impaired because the only glucose transporter at the blood-brain barrier, GLUT1, is defective or not available in sufficient quantities. Common consequences include epilepsy, developmental delay, complex movement disorders, and cognitive impairments. The ketogenic diet therapy remains the preferred treatment at this time.
The association’s purpose is to promote public health and research. Today, we have over 100 members, consisting of parents, affected individuals, relatives, and friends of families. The focus is now on networking and supporting families, as we can only achieve things together! Our board and active members all contribute their time and work for the association on a voluntary basis.
Förderverein Glukosetransporter(GLUT1)-Defekt e.V. is a member of the umbrella organization ACHSE e.V.
The association’s purpose is to promote public health and research. Today, we have over 100 members, consisting of parents, affected individuals, relatives, and friends of families. The focus is now on networking and supporting families, as we can only achieve things together! Our board and active members all contribute their time and work for the association on a voluntary basis.
Förderverein Glukosetransporter(GLUT1)-Defekt e.V. is a member of the umbrella organization ACHSE e.V.
Care provisions
This support group organisation offers the following
- Participation in registries
- Internal forum
- Regular meetings
- Newsletter / Association journal
Special offers
1. Information about GLUT1 Deficiency and direct discussions on all related questions2. EpiCook app for meal calculation and meal planning
3. Online formats with experts such as doctors and dietitians
4. List of doctors and dietitians compiled through recommendations from our members
Preview of the represented diseases 1
13.553421852.5475344Support association Glukosetransporter(GLUT1)-Defekt e.V.
Last updated:
07.01.2025