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 Dalkeith, a metabolic nurse at the Sydney Children’s Hospital Network. This discussion will focus on the experience of living with one of the homocystinurias or caring for someone that does including:
- Experience of having the homocystinuria diagnosed.
- What it is like managing homocystinuria day–to-day and how it has this changed your life.
- Challenging aspects of managing homocystinuria.
- What supports you in managing homocystinuria.
- What research efforts and the potential for new treatments could mean.
Join the conversation on May 18 @ 6am AEST, May 17 @ 3pm CDT, 4pm EDT and 10pm CEST.
Director & Chair
HCU Network Australia
Son with classical homocystinuria (non B6 responsive)
Son with classical homocystinuria (B6 responsive)
Daughter with severe MTHFR deficiency
Two sons with classical homocystinurias (non B6 responsive)
Daughter with CblC
Son with CblG
Adult with classical homocystinuria (non B6 responsive)
Supporting Patient Organisations
Event Major Sponsor
Our specialty rare disease products are marketed directly by Recordati Rare Diseases in Europe, the Middle East, the U.S.A., Canada, Russia, Japan and Australia, in some Latin American countries, and through selected partners in other parts of the world.
Highly trained specialists and a scientific support team are available to collaborate with doctors, healthcare professionals, patients groups and families, to help improve the quality of life for people with rare diseases.
Thanks to a unique production, packaging and distribution system developed for our products, our dedicated specialists are able to support patients in their home countries.
Recordati Rare Diseases is committed to supporting families affected by rare diseases through the research and development of new therapies and the distribution of specific scientific knowledge throughout the medical community.