Chronic Kidney Disease (CKD)
UPDATE March 2012!
Nephrotic Sydnrome Club Meetings in HCMC in November 2011 and in Hanoi in February 2012 were a huge success!
Staff and families have indicated that help is desperately needed for children living in Vietnam with Chronic Kidney Disease!
Health professionals at the National Hospital of Pediatrics in Hanoi (NHP) and Children's Hospitals 1 and 2 (CH1 & CH2) have communicated with CLAN about the desperate need for help to tackle the huge issue of Chronic Kidney Disease affecting children in Vietnam. It is estimated that there are currently around 3,000 children with Nephrotic Syndrome (NS) in Vietnam - not to mention many other forms of CKD as well - and yet they receive no international support or assistance currently, and morbidity is very high.
Renal departments and health professionals in Vietnamese paediatric hospitals are currently overwhelmed with the high numbers of children affected by CKD - and in particular NS. Every year, the three largest paediatric hospitals in Vietnam each receive about 300 new patients who are diagnosed with NS, and this means enormous workloads and strain on existing health systems. Based on experiences and outcomes they have achieved to date with CLAN's strategic framework for helping children with other chronic health conditions, colleagues in Vietnam are now very keen to collaborate with CLAN to help children with CKD. In particular, CLAN has been asked to support the start-up of Nephrotic Syndrome Clubs, and we are excited to be launching the first NS Club meetings in November 2011 in Ho Chi Minh City (HCMC).
Planning for the NS Clubs is now well underway, with translation of key educational resources into Vietnamese language complete. For the first time, families will have access to a comprehensive range of resources on NS! Sincere thanks to Royal Children's Hospital Melbourne and Nottingham University Hospitals for generously sharing their resources for translation.
CLAN is excited about networking with potential partners internationally to find the best ways to support the children in Vietnam who are living with NS to feel part of the international community of children and individuals who are living with NS. If your organisation would like to be involved, please email us at firstname.lastname@example.org
In the meantime, some useful links include:
- The NephCure Foundation
- Childhood Kidney Support Network of Australia (see them on Facebook!)
- Kidney Kids (of Kidney Health Australia)
- Kidney Times (of the Renal Support Network)
- Kids Companion on Kidneys (Kidney Health Australia publication)
- National Kidney Foundation (US)
- Kidney Kids Health Parents - Kids and Teen section on chronic kidney disease and what kids need to know about Kidneys
- Kidney Kids Fun page Kidney Health NZ - information, books, puzzles and colouring pages
- Kidney Kids Support Group New Zealand Visit Kee-Wee who guides you through the kidney world