Patient-Expert Meet Prague

Dear All,

It is our pleasure to share with you details of the HCU and Methylation Defects Patient & Expert Meet planned for World Rare Disease Day, 2016.  

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The Meet is being convened by HCU Network Australia and the European Network and Registry for Homocystinurias and Methylation Defects (E-HOD).  The Recordati Rare Disease Foundation are generous supporters of the event.  

 

The aim of the meet is to strengthen the interaction between key stakeholders, namely the patients, clinicians and researchers and to promote optimal health for patients with these disorders.  Our hope is that the process of interaction will lead to improved dissemination of patient information and the establishment of novel disease specific patient groups in countries where none exist.  Patients will benefit from hearing up to date information on HCU, (re)methylation and folate defects and how research can offer hope for progress in the future.

The Meet is a full day event being held on 29 February, 2016 at the Novotel Hotel Wenceslas Square, Prague.  Attendance is free of charge and the organiser’s will provide refreshments (tea, coffee and snacks) and lunch.  Patient and/or patient representatives will be responsible for their own travel and accommodation expense for attendance.

The formal invite, program and overview is attached and we would be delighted if you would share this event with your members as you consider appropriate.  We note that attendance is by invitation only and spaces are strictly limited.  Expressions of interest for attendance are to be forwarded to Tara at tara@hcunetworkaustralia.org.au or Marike at marikegroenendijk@me.com by no later than 31 December 2015.

For full details see the Program Overview  /  Portugese version