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Patient & Expert Meet, Prague 2016

Novotel Praha Wenceslas Square Kateřinská 38, 120 00, Prague

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. 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…

Clinical Guidelines Webinar

Join us for an online webinar featuring Doctor Andrew Morris, the first named author on the recently published Guidelines for the diagnosis and management of cystathionine beta-synthase deficiency from the Journal of Metabolic Disease. You can read the Clinical Guidelines here.   Registrations for the webinar have now closed as the event has passed. The…

Milford Track World Rare Disease Day 2017

Assemble the hiking boots and get ready to take on what has been described as "the finest walk in the world". Experience New Zealand's Milford Sound next World Rare Disease Day as we walk towards progress on the Milford Trek, NZ. Places are strictly limited. For more information contact info@hcunetworkaustralia.org.au

Cobalamin-Related Remethylation Disorders and MTHFR Deficiency Guidelines Webinar

  Thank you to everyone who attended the online webinar featuring Dr. Carlo Dionisi-Vici, one of the first authors of the Guidelines for diagnosis and management of the cobalamin-related remethylation disorder cblC, cblD, cblE, cblF, cblJ and MTHFR deficiency from the Journal of Inherited Metabolic Disorders. You can read the guidelines here. <!---The webinar has been recorded and the presentation…

Patient-Expert Meeting, Rio 2017

Rio

The host city of the 2016 Olympic Games is now the proposed venue for the 2nd International Patient-Expert Meeting for Homocystinuria. The Meeting is being scheduled outside of the scientific programme of the 13th International Congress of Inborn Errors of Metabolism (ICIEM) giving congress participants the opportunity to attend. The meeting will enable stakeholders to…

Genetics of HCU, therapies and potential candidates webinar

The online webinar discussed the genetics of HCU including an overview of classic & potential therapies. This webinar has now been completed, thank you to all those who registered and attended. You can now view the recording of the webcast (login required). Speaker Bios: Professor Bridget Wilcken (Australia) Professor Bridget Wilcken has spent her professional…

Patient-Expert Meeting 2019

NH Collection Roma Centro Via dei Gracchi, 324, 00192, Roma

On behalf of the organising committee, I would like to invite you to Rome, Italy, on Thursday 28th February - Friday 1st March 2019 for the 3rd International Homocystinurias Patient-Expert Meeting. The meeting will bring together leaders in the field of homocystinuria research, clinical care, nutrition and advocacy for a two day conference. The meeting will be held in…

Living With Classical Homocystinuria Webinar

This live webinar discussed the impact classical homocystinuria takes on a person and their family, including tips for managing the disorder and advice for staying positive in the face of health adversity. Webinar Details: Speakers: Dr Andrew Morris, Anita Inwood, Sue Thompson Topic: Living with classical homocystinuria Location: The webinar was live streamed from the…

4th International Homocystinurias Patient-Expert Meeting

  iHOPE Meeting 2021   The 4th International Homocystinurias Patient Expert (iHOPE) Meeting brought together leaders in the field of homocystinuria research, clinical care, nutrition and advocacy. iHOPE 2021 was a collaborative event organised by HCU Network Australia and the European Network and Registry for Homocystinurias and Methylation Defects (E-HOD). iHOPE 2021 included renowned researchers,…

Navigating the Homocystinurias Webinar

HCU Network Australia invites you to join our upcoming virtual panel discussion on May 18 AEST. Navigating the Homocystinurias Our webcast will explore what it means to ‘Navigate the Homocystinurias’ and bring together a virtual panel of patients and caregivers from Australia, USA, UK, Ireland and Canada. The virtual event will be moderated by Troy…