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So far Cystinuria.org has created 21 blog entries.

Advicenne Receives European Commission Approval to Market ADV7103 (Sibnayal™)

By |2021-06-28T17:38:10-07:00June 28th, 2021|

Advicenne Receives European Commission Approval to Market ADV7103 (Sibnayal™) and announces Leadership Changes to support Commercialisation ADV7103 becomes the first and only label-approved drug for the treatment of distal renal tubular acidosis (dRTA) in adults, adolescents and children aged one year and older Didier Laurens to join Advicenne as new CEO Resumption of trading [...]

My journey with Cystinuria has been a rocky road to say the least (pun intended).

By |2021-06-24T08:15:58-07:00June 24th, 2021|

My journey with Cystinuria has been a rocky road to say the least (pun intended). I had my first kidney stone at 9 months of age when I was a baby and had my first surgery in Santiago, Chile. The stone was the size of an olive seed so you can imagine the type [...]

My cystinuria and me.

By |2021-06-24T08:15:47-07:00June 24th, 2021|

My cystinuria and me. Hello, I am Nathalie, Venezuelan, married, 40 years old and clinical psychologist. My medical history began in 2004, at the age of 23 years with the following symptoms when I woke up one morning, I felt a very intense pain in the abdominal area that I almost fainted, and this [...]

Strength and Perseverance

By |2021-06-22T10:59:54-07:00June 21st, 2021|

Strength and perseverance NOTE: this is an update to their original story HERE Strength and perseverance are the two words I’ve used in describing any individual with Cystinuria…. and that means my 3 Bare Kids as well. I have also been quoted in saying “to live your life to the fullest despite the physical [...]

Living with cystinuria

By |2021-06-18T13:46:58-07:00June 18th, 2021|

Living with cystinuria My name is Mandi Payne and I have been suffering from cystinura for 5 years. Throughout those years I have undergone around 20 surgeries and pain every single day.  I want to share my story because education is one way to help find a cure. I have spent the almost all [...]

Stone Survior

By |2021-06-18T13:45:45-07:00June 18th, 2021|

#stonesurvior My name is Bee Salinas, I am 33 years old and I was diagnosed with cystinuria when I was 18 months old. I have been through countless procedures 25 to be exact. Growing up I didn't get the normal childhood, I grew up in hospitals and was home schooled for a large portion [...]

Ella-Louise Gilbert – UK

By |2021-06-18T13:47:22-07:00June 18th, 2021|

Ella-Louise Gilbert - UK Hi, my name is Ella! I am 22 years old and I live in the United Kingdom, but I was born and raised in Belgium. I was diagnosed with Cystinuria when I was just 5 years old and I've had 11 surgeries and counting. Growing up and attending school with [...]

Christina Davis

By |2021-06-24T08:31:01-07:00June 17th, 2021|

Christina Davis I am 61 years old. I have suffered with Cystinuria since I was about 9yrs. Although I was not diagnosed until I was 17. When I was taking my college physical I was told what I had. I have suffered with this disease for years. What saved me was Thiola. I don't [...]

Helen’s Story

By |2021-06-17T16:47:17-07:00June 16th, 2021|

Helen's Story Helen Guerra, a 20-year-old resident of Miami, has lived more than half of her young life diagnosed with a rare kidney disease called cystinuria. She led a fulfilling childhood filled with a love for reading, dancing, and all things Disney. Helen’s life changed at age 9, however, when she began experiencing [...]

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