Nephrotic Syndrome Club Meeting

Nephrotic Syndrome Club Meeting

The Hue Nephrotic Syndrome Club Meeting was held on 20 June 2017 at the Hue Central Hospital in Vietnam. With approximately 80 children and family members and 10 medical and nursing professionals in attendance the meeting was a huge success. Health professionals included renal nurses, nephrology team doctors and junior doctors.

The Club meeting began with an introduction from the Hospital Executive, and was followed by a talk on nephrotic syndrome aimed at parents and children by Dr Fiona Mackie, Paediatric Nephrology Specialist at Sydney’s Children Hospital, Randwick. Dr Mackie's presentation led on to an open forum Q & A session in which parents and children were encouraged to ask questions and engage in an interactive discussions.

This event was an opportunity for families to come together and learn more about what nephrotic syndrome is; how relapses can be managed by medical professionals, patients, and family members; relapse symptoms to look out for so early treatment can be started; goals for long term health; dietary measures that may help; and information about the different medications used to manage Nephrotic Syndrome.

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Dr Mackie notes since her last visit with the Nephrotic Syndrome Community in Hue she has been able to see an overall greater understanding of the basics of NS. This is a step in the right direction, and she also notes that questions have become more sophisticated, stating there are more questions being asked concerning long-term complications and medications.

For upcoming NS Club meetings in Hue, Dr Mackie hopes to see an increase in local sponsorship, noting it would have been great if there was more funding available for the families this past meeting. She also believes it would benefit the NS Community in Hue to hear from family members with children living with long standing NS. Engaging in an open discussion amongst families at different stages in their child’s treatment would allow families to become familiar with the journey that lies ahead.

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CLAN was thrilled to see the sustained progress being made within the NS Community of Vietnam and sincerely thank Dr Mackie, the Vietnamese NS Community, and Vietnamese medical professionals for their ongoing efforts to date. CLAN looks forward to exploring opportunities to collaborate into the future and further assist with supporting educational and Club meetings that benefit the children and families.

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