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Navigating the Homocystinurias Webinar

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

Meeting OverviewSpeakersOrganisersWebinar SponsorVideos

Navigating the Homocystinurias

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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:

  1. Experience of having the homocystinuria diagnosed.
  2. What it is like managing homocystinuria day–to-day and how it has this changed your life.
  3. Challenging aspects of managing homocystinuria.
  4. What supports you in managing homocystinuria.
  5. What research efforts and the potential for new treatments could mean.

The virtual event presentation were all recorded and as now online and available should you wish to view the presentation.

Kind regards,

Tara Morrison
Director & Chair
HCU Network Australia

 

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Gillian Dennehy

Ireland
Son with classical homocystinuria (non B6 responsive)

Marian Davison

Marian Davison

Canada
Son with classical homocystinuria (B6 responsive)

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Renske Dijkhuis

Australia
Daughter with severe MTHFR deficiency

Sophia Tattersall-image

Sophia Tattersall

UK
Two sons with classical homocystinurias (non B6 responsive)

Nadine Berelowitz image

Nadine Berelowitz

Australia
Daughter with CblC

Dana Hunt-image

Dana Hunt

USA
Son with CblG

Kristin Rapp-image

Kristin Rapp

USA
Adult with classical homocystinuria (non B6 responsive)

Event Host

The “Navigate the Homocystinurias” webcast is being hosted by HCU Network Australia as a part of World Homocystinurias Awareness Day 2022. WHAD is being supported by the following patient organisations and consortia.

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Supporting Patient Organisations

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Event Major Sponsor

recordati_logo

At Recordati Rare Diseases, we focus on the few – those affected by rare diseases. We believe that every single patient has the right to the best possible treatment. Patients with rare diseases are our top priority. They are at the core of our planning, our thinking and our actions.Recordati Rare Diseases is a pharmaceutical company that provides treatment for patients with rare diseases. Created in 1990, Recordati Rare Diseases is one of the most active companies in the field of rare diseases.

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.

Access to the recorded event presentations is restricted to registered users on the HCU Network Australia Website.

To access the presentation recorded videos: Please Login
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If you are not registered on the HCU Network Australia website, please register now.
For patient and caregivers:  (https://www.hcunetworkaustralia.org.au/register/)

For Healthcare Professionals: (https://www.hcunetworkaustralia.org.au/homocystinuria-healthcare-professional-contact-register/)

Details

Date:
May 18