Please refer back to this page for information on upcoming events.
This information session focussed on clinical trials and their role in advancing new treatment options. To view the recorded presentations click
here.
HCU Network Australia is leading the initiative to launch a global awareness day for the homocystinurias. To view the recorded presentations click
here.
iHOPE 2021 brought together leaders in the field of homocystinuria research, clinical care, nutrition and advocacy. To view the recorded presentations click
here.
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…
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 meeting brought together leaders in the field of homocystinuria research, clinical care, nutrition and advocacy for a two day conference…
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).
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.
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, QLD,…
