Patient-Expert Meeting 2019
The Patient-Expert Meeting was held in NH Roma Centro, Rome on 28 FEBRUARY to 1 MARCH 2019. It was the third international educational event held specifically for patients with homocystinuria and associated disorders and their families. The main goal of the meeting was to enhance the exchange of information and ultimately promote improved health outcomes for patients affected by these disorders. A secondary aim of the meeting was to help lay the foundation for further national patients groups and a global homocystinuria ‘umbrella’ patient group.
The Patient-Expert Meeting was a collaborative venture organised by HCU Network Australia and the European Network and Registry for Homocystinurias and Methylation Defects (E-HOD), and sponsored by the Recordati Rare Disease (RRD) Foundation.
The meeting brought together leaders in the field of homocystinuria research, clinical care, nutrition and advocacy for a two-day conference. The meeting was held in conjunction with Rare Disease Day 2019 on 28th February.
On behalf of the organising committee, for the 3rd International Homocystinurias Patient-Expert Meeting I would like to thank all speakers, sponsors and attendees. We are pleased to provide below the presentations from the meeting for anyone unable to attend.
Tara Morrison, HCU Network Australia Director and Chair