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)