Following on from the First European Conference on GLUT1 Deficiency that was held in Milan in 2016, we continue with our biennial developmental programme of conferences to increase knowledge and awareness of this specific rare disease by bringing together experts in the field.

The programme is as follows:

Thursday 21st June

  • 4 pm – 8 pm Registration Open

Friday 22nd June

  • 8.45 am: Welcome Joerg Klepper (Germany) and Emma Williams MBE (UK)
  • 9 am: Keynote Lecture – “Novel Treatment Options for Glut 1D” Darryl C. De Vivo, (USA)

Session I: Research & Clinical Trials
Chair: Helen Cross (UK)

  • 9.45 am: Basic Science and Research Overview (Stephane Auvin, France)
  • 10.15 am:  C7 14y experience (Fanny Mochel, France)
  • 10.45 am: UX007 PED (Adela Della Marina, Germany)
  • 11.15 am: COFFEE
  • 11.45 am: NIH C7 Study (Joerg Klepper, Germany)
  • 12.15 pm: Decanoic Acid (C10) Study (Helen Cross, UK)
  • 12.45 pm:  Questions and Answers with Panel
  • 1 pm: Lunch

Session II: Glut 1D Europe and Beyond
Chair: Joerg Klepper (Germany)

  • 2 pm: The 2018 Ketogenic Dietary Therapy revised Global Consensus Statement. What does this mean for Glut 1D? (Eric Kossoff, USA)
  • 2.30 pm: Cardiovascular & Ketogenic Diet in Glut 1D? Long term observational Study (Joerg Klepper, Germany)
  • 3 pm: Movement Disorder in Glut 1D (Valentia De Georgis, Italy)
  • 3.30 pm: TEA
  • 4 pm: Incidence of Glut 1D in Scotland & Variable Phenotypes (Sameer Zuberi, UK)
  • 4.30 pm: Glut 1D in Scandinavia (Anette Ramm-Pettersen, Norway)
  • 5 pm: Question and Answer Session with Panel
  • 5.30 pm: Close for the day
  • 7 pm: Social Evening and Buffet (Conference Hall)

For more information, please visit the dedicated area of the Matthew’s Friends website by clicking here.