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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…HCUNetworkAustralia.org.au
Join us for an online webinar discussing the genetics of HCU including an overview of classic & potential therapies with two guest presenters. 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). If you are unable to attend the webinar and you have a question for Professor Wilcken and Professor Kožich, you can join the discussion via the HCU Forum. Click here to access the…
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…
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. Webinar Details: Speaker: Dr. Carlo Dionisi-Vici Topic: Guidelines for diagnosis and management of the cobalamin-related remethylation disorder cblC, cblD, cblE, cblF, cblJ and MTHFR deficiency Time: Tuesday 16th May 2017 Australian times: NSW, VIC,…
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 firstname.lastname@example.org
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. If you are unable to attend the webinar and you have a question for Dr. Morris about the Clinical Guidelines, you can join the discussion…
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…hcunetworkaustralia.org.au
Join Team HCU in either the Sydney Marathon, Half Marathon, Bridge Run or the Family Fun Run. In 2014 we entered for the first time as a Team and one of our runners was the highest individual fundraiser for the event. As a team we raised in excess of $30,000.00. In 2015 we hope the event is as much a success.
Rare Disease Day held on the last day of February each year was first launched in Europe and it has progressively became a world event with more and more countries participating each year. Patient organisations in Australia have engaged in Rare Disease Day since 2009. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patents’ lives. The 8th annual World Rare Disease Day will be…
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