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So far Cystinuria.org has created 65 blog entries.

Extracorporeal Shockwave Lithotripsy for Cystine Stones in Children: An Observational, Retrospective, Single-Center Analysis

By |2022-08-05T09:08:01-07:00December 5th, 2021|

Extracorporeal Shockwave Lithotripsy for Cystine Stones in Children: An Observational, Retrospective, Single-Center Analysis READ FULL STORY HERE Purpose: Cystinuria is a genetic disorder characterized by a defective reabsorption of cystine and dibasic amino acids leading to development of urinary tract calculi from childhood onward. Cystine lithiasis is known to be resistant to fragmentation. [...]

A natural compound designated as an orphan drug for cystinuria

By |2022-08-05T09:19:31-07:00October 9th, 2021|

A natural compound designated as an orphan drug for cystinuria READ FULL STORY HERE A natural compound with antioxidant properties, L-ergothioneine, has been designated as an orphan drug for cystinuria treatment by the European Medicines Agency (EMA). Studies in a murine model of this rare disease have shown that L-ergothioneine could prevent the [...]

Researchers find potential biomarker for appearance of stones in cystinuria

By |2021-10-07T09:32:04-07:00October 7th, 2021|

Researchers find potential biomarker for appearance of stones in cystinuria A new study has identified a possible biomarker for the appearance of cystine stones in the urinary tract in a murine model of cystinuria. The work, published in the journal Antioxidants , has been coordinated by Virginia Nunes, researcher at the Institut d'Investigació [...]

A natural compound designated as an orphan drug for cystinuria

By |2021-09-08T12:01:08-07:00September 8th, 2021|

A natural compound designated as an orphan drug for cystinuria See Original Story HERE A natural compound with antioxidant properties, L-ergothioneine, has been designated as an orphan drug for cystinuria treatment by the European Medicines Agency (EMA). Studies in a murine model of this rare disease have shown that L-ergothioneine could prevent the formation [...]

Orsini Specialty Pharmacy Announces Access To Tiopronin For The Treatment Of Severe Homozygous Cystinuria

By |2022-07-22T08:55:09-07:00July 23rd, 2021|

Orsini Specialty Pharmacy Announces Access To Tiopronin For The Treatment Of Severe Homozygous Cystinuria ELK GROVE VILLAGE, Ill., July 22, 2021 /PRNewswire/ -- Orsini Specialty Pharmacy announced today that it is now dispensing tiopronin, the first available generic version, in the US, of THIOLA® (tiopronin). Tiopronin is a reducing and complexing thiol indicated, [...]

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 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 [...]

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 [...]

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