Actualités

Location: Novotel Brussels Airport
Leonardo Da Vincilaan 25
B-1831 Diegem

Morning session:

• 9.00- 9.40: Update by the spoke persons of the scientific board: Goals and Working groups. Sven Garbade & Margreet Wagenmakers
• 9.40-10.00: Activity Update E-IMD Registry. Florian Gleich & Stefan Kölker
• 10.00-10.30:: Update propionic academia project. Kim Chapman
• 10:30 – 11:00: Severity-adjusted evaluation of liver transplantation on health outcome in Urea Cycle Disorders. Roland Posset & Sven Garbade
• 11.00:11:15: Coffee break
• 11.15-12.00: Impact of liver transplantation on health related quality of life in intoxication-
  type inborn errors of metabolism and on neurological outcome. Benedetta Greco & Diego
  Martinelli
• 12.00-12.30: The management and clinical outcomes of pregnancies in females with Urea
  Cycle Disorders: a review of the literature and results of an international survey. Proposition
  for guidelines. Margreet Wagenmakers
• 12.30-13.15 Lunch

Industry session:

• 13.15-14.00: ARG1-D research project and pegzilarginase update. Mattias Rudebeck; Immedica Pharma
• 14.00-14.45: A first-in-human clinical trial of gene editing for the correction of neonatal onset OTC deficiency. George Diaz; iECURE
• 14.45-15.00 Closing remarks

Monday, 4th December 2023, 09:00-15:00 CET

Location: Novotel Brussels Airport
Leonardo Da Vincilaan 25
B-1831 Diegem
H0467-sb@accor.com

Morning session:

• 9.00- 9.40: Update by th e spoke persons of the scientific board: Goals and Working groups. Sven Garbade & Margreet Wagenmakers
• 9.40-10.00: Activity Update E-IMD Registry. Florian Gleich & Stefan Kölker
• 10.00-10.30: Update propionic academia project. Kim Chapman
• 10:30 – 11:00 Severity-adjusted evaluation of liver transplantation on health outcome in Urea Cycle Disorders. Roland Posset & Sven Garbade
• 11.00:11:15 Coffee break
• 11.15-12.00: Impact of liver transplantation on health related quality of life in intoxication-type inborn errors of metabolism and on neurological outcome. Benedetta Greco & Diego Martinelli
• 12.00-12.30: The management and clinical outcomes of pregnancies in females with Urea Cycle Disorders: a review of the literature and results of an international survey. Proposition for guidelines. Margreet Wagenmakers
• 12.30-13.15 Lunch

Industry session:

• 13.15-14.00: ARG1-D research project and pegzilarginase update. Mattias Rudebeck; Immedica Pharma
• 14.00-14.45: A first-in-human clinical trial of gene editing for the correction of neonatal onset OTC deficiency. George Diaz; iECURE
• 14.45-15.00 Closing remarks

This year the congress theme of the SSIEM annual Symposium is Building Bridges. During SSIEM 2019, we hope to connect new-generation scientists with those who are well established. We hope to build bridges between laboratory and clinic, and to connect up the knowledge which has been generated on a range of diseases.

In the scientific programme there are many opportunities to present new relevant results on research in Inborn Errors of Metabolism. More than 70 abstracts have been selected for an oral presentation. In addition, over 600 posters will be presented as well as more than 200 e-posters. It is still possible to submit an abstract for the Late Breaking News session which will take place on Friday September 6th. For the Late Breaking News session 4 abstracts will be selected for an oral. The deadline for submitting a Late Breaking News abstract is July 22nd. We invite you to submit an abstract!

Tuesday, 13th November 2018, Brussels

09:00-16:15

Meeting Venue

Novotel Brussels Airport

Tuesday, 12th November 2019, Brussels

09:00-16:15

Meeting Venue

Novotel Brussels Airport

Final Program

Coming soon

The first E-IMD European patient organization meeting for inborn errors of metabolism was held on 3rd September 2012 in Birmingham. The meeting had a fantastic turnout with 34 participants including twelve different patient organizations, academic partners and industry.

The first E-IMD European patient organization meeting for inborn errors of metabolism was held on 3rd September 2012 in Birmingham. The meeting had a fantastic turnout with 34 participants including twelve different patient organizations, academic partners and industry. The aim was to share experience, collaborate and set patient organizations (PO) priorities for families with OADs and UCDs. The meeting has resulted in an agreement that a European network for patient organizations in IEM should be formed. The group has already decided to set-up a repository for sharing resources and information on the E-IMD website. These resources can be translated into patients own language and will include, for example, a cookery book for low protein intake, clinical care pathway guidelines and a metabolic guide.

The next meeting will be held at the time of the SSIEM 2013 in Barcelona and  the organising committee will meet in April 2013 to plan the Patient Organisation programme for this event.

The Patient Organisation meeting was chaired by Steve Hannigan, Executive Director of Climb (UK)

Organic Acidemia Association has updated its website and provides a lot of information about organic acidurias.

Videos from 2018 OAA FOD Conference Speakers were added on website.

Go to the website

The manuscrit "Behavioural and emotional problems, intellectual impairment and health-related quality of life in patients with organic acidurias and urea cycle disorders" has been accepted for publication in Journal of Inherited Metabolic Disease.