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1. The First Cystinosis Patient was Transplanted on October 7, 2019!
Yesterday was a day that will forever be remembered as a historic day for adults and children with cystinosis and their families. It’s a day that could very well mark the beginning of a world without cystinosis.
Yesterday, Jordan Janz, age 20 from Consort, Alberta, was the first patient to receive a genetically modified autologous stem cell transplant for cystinosis.
2. Congratulations to Master. Saran SivaArasu who underwent a successful kidney transplantation on 28/05/2017. The kidney was brought from Coimbatore from a child who had brain death following a vehicular accident. Saran is doing very well.
Meanwhile Master. Sanjay SivaArasu, his brother has completed 6 years of transplantation.
Master. Sanjay SivaArasu
3. Children enrolled in the registry
4. The 9th International Cystinosis conference – June 30 to July 3 2016
5. Kidney Disease & Children. Act Early to Prevent It! – March10 2016
SAPIENS HEALTH FOUNDATION a NGO committed to the cause of providing Care and support for kidney failure patients conducted a function in Chennai to celebrate World Kidney Day 2016. The theme for this year world kidney day was “Kidney Disease & Children. Act early to prevent it!”. Dr. Rajan Ravichandran, the founder of Sapiens Health Foundation highlighted the activities of the foundation and explainedto the audience important causes of kidney disease in children and the ways to prevent it. Urinary Tract Infection in children, he said should not be ignored. It warrants detailed investigation. Similarly , life style changes has led to increased incidence of obesity and hypertension in children which can result in kidney disease in future. Prof. B.R. Nammalwar, one of the senior paediatric nephrologist of the country presided over the function and lauded the activities of Sapiens Health Foundation. Mr. Vidyaakar of Udavum Karangal was the guest of honour. Actor Bindu madhavi distributed medals to some of the children who had fought kidney diseases. Crazy Mohan enlivened the atmosphere through his characteristic humour laced talk.
6. Paintings by Master. Hariharan displayed in US exhibition – June 2015
Master. Hariharan underwent kidney transplant successfully in June 2015 with father as his donor.
7. The 8th International Cystinosis conference – July 24 & 25 – 2014
The 8th International Cystinosis conference held on 25th July 2014 at Manchester. Dr. Rajan Ravichandran participated and spoke about CYSTINOSIS FOUNDATION INDIA.
8. “Procysbi” – was approved by the U.S. Food and Drug Administration
Dear Friends,
A long awaited for improved treatment for cystinosis – “Procysbi” – was approved by the U.S. Food and Drug Administration earlier this year.