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 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 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™) 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. 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 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 [...]
#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 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 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 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 [...]
