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May 2022

Navigating the Homocystinurias Webinar

May 2022

HCU Network Australia invites you to join our upcoming virtual panel discussion on May 18 AEST.

November 2021

4th International Homocystinurias Patient-Expert Meeting

Nov 2021

July 2019

Living With Classical Homocystinuria Webinar

Jul 2019

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 HCU Network Australia website. The webcast recording will soon be loaded here. Thank you for registering for the Living with Classical Homocystinuria webinar. Speaker Bios:…

February 2019

Patient-Expert Meeting 2019

Feb 2019

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 conjunction with Rare Disease Day 2019 on 28th February. More details will be shared soon. We are now calling for Expression of Interest for the Patient-Expert…

October 2018

Genetics of HCU, therapies and potential candidates webinar

Oct 2018

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 life in the diagnosis and clinical care of individuals affected by metabolic disorders, and also has had extensive research interests in this area, in particular…

September 2017

Patient-Expert Meeting, Rio 2017

Sep 2017

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 come together and share their expertise and experiences. We are now calling for expression of interest for the 2017 Patient-Expert Meeting. For more information about…

May 2017

Cobalamin-Related Remethylation Disorders and MTHFR Deficiency Guidelines Webinar

May 2017

  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. Speaker Bio: Dr. Carlo Dionisi-Vici Dr. Carlo Dionisi-Vici, paediatrician is Head of the Unit of Metabolic Disease at the Bambino Gesù Children’s Research Hospital in Rome, Italy; is President of the Italian Society…

February 2017

Milford Track World Rare Disease Day 2017

Feb 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

November 2016

Clinical Guidelines Webinar

Nov 2016

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 webinar recording is now available. Watch Now Webinar Details: Speaker: Dr. Andrew Morris Topic: The recently published Clinical Guidelines Time: TUESDAY 29th November 2016 Australian times:…

February 2016

Patient & Expert Meet, Prague 2016

Feb 2016

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 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…