Pilloxa has announced that it is to collaborate with the Nordic office of Chiesi Global Rare Diseases on using the company’s platform to support the treatment journey for patients with nephropathic cystinosis across Scandinavia.
“We are honored to work with the Nordic office of Chiesi Global Rare Diseases to support patients, an incredible partner within rare diseases aiming to improve the lives of people across the world. Digital solutions have a great potential to give personal support to chronically ill patients at every step on the treatment journey, to give hope and motivate them in their everyday battle. Together we are at the forefront of a new paradigm within personalized healthcare, and we are just getting started. We strongly believe that this will increase the quality of life for patients with nephropathic cystinosis and hope to ease the transition of care into adult life for many patients,” says Helena Rönnqvist, CSO Pilloxa.
Nephropathic cystinosis is an ultra-rare, multisystemic, genetic disorder characterized by the accumulation of the amino acid cystine in the lysosomes within the cells. This accumulation leads to damage in various tissues and organs of the body including kidneys, eyes, muscles, liver, pancreas and brain. The continuous progression of the disease, together with the high medication burden, places large demands on the patients and their caregivers, describes the company in a press release.
Most younger patients, under 11 years of age, follow the prescription correctly. However, as with other chronic diseases, many teenagers, and young adults with nephropathic cystinosis are struggling to follow the treatment regimen. Strategies such as better information on the disease, patient self-care promotion, and facilitated transition to adult healthcare services have been suggested to improve compliance and the clinical management of cystinosis.
“In the work developing this app, Pilloxa has interviewed patients, caregivers and physicians to get an insight on the gaps that need to be filled in order to improve the treatment journey.”
“Patients are the beginning and the end of our journey. In the work developing this app, Pilloxa has interviewed patients, caregivers and physicians to get an insight on the gaps that need to be filled in order to improve the treatment journey. We would like to thank all of them for giving their time as well as sharing their knowledge on how it is to live with nephropathic cystinosis,” says Brita Forsberg, Medical Advisor, Nordics Chiesi Global Rare Diseases.
Photo of the founders of Pilloxa. From Left: Helena Rönnqvist, Per Nilsson, Francesco Mazzotta