Nephrotic Syndrome Club Meeting in Thái Bình Province, Vietnam
Sincere congratulations to families and children who gathered together in Thái Bình Province on 24 October 2013 to start the very first NS Club in North-Eastern Vietnam.
Many thanks must go to the wonderful staff of the Department of Nephrology and Haemodialysis at the National Hospital of Pediatrics (NHP) in Hanoi, Vietnam for their invaluable support and commitment, and for travelling to Thái Bình Province to make this day a reality. Staff and families worked together to ensure the first provincial Nephrotic Syndrome (NS) Club meeting in Vietnam was a great success.
Thái Bình is a coastal eastern province in the Red River Delta region of Northern Vietnam. It is 110km from Hanoi, and this is a very great distance for NS Families to have to travel for treatment for their children if the only quality care available is in Hanoi. Making sure quality care and support is available locally is so important... Strengthening health systems in this in this part of North Vietnam and uniting the local NS Community in this way was a fantastic first step towards reducing financial burdens and other hardships on the NS Community of North Vietnam.
There were 50 families in attendance at the Thái Bình NS Club meeting. Health professionals followed the same Club program as was used in Hanoi earlier this year. Dr Nguyen Huong (Head of the Department of Nephrology & Hemodialysis from NHP) shared lectures with the families on NS, and spent time answering their questions. A member of the nursing staff taught families how to use urine dipsticks to check for protein and manage NS optimally. Local health medical doctors shared with families general information about the situation for NS families in their area.
CLAN understands that it has been very difficult for families of children living with NS in Thái Bình Province. Local health professionals shared that up to 30% of children are not receiving appropriate follow up medicines, and it will be great to learn more in future about the underlying reasons for this.
The Thái Bình NS Club has a bright future ahead of it. They were able to elect a President, Vice President and other committee members, and CLAN looks forward to working with them in partnership, and helping them connect more broadly to the international NS Community. Many thanks also to NephCure for their ongoing interest and commitment to helping children who are living with NS in Vietnam - it's exciting to have such a strong partner as we all plan for the future!