Travere Therapeutics, the IgA Nephropathy Foundation and NephCure Kidney International have teamed up with the rare kidney disease (RKD) community to develop a new campaign aimed at boosting awareness of the disease.
Kidney disease is a major burden but has a low level of awareness compared to conditions such as cancer and Alzheimer’s disease, with rarer forms of the disease are even more unknown.
According to the Centers for Disease Control and Prevention, more than 1 in 7—that is, 15% of U.S. adults or 37 million people—are estimated to have chronic kidney disease (CKD), while as many as 9 in 10 adults with CKD do not know they have the condition.
RKDs constitutes at least 150 different disorders, and they have an overall prevalence of about 60 to 80 cases per 100,000 in the U.S., with many having an inherited disorder that led to their RKD.
Travere, in a statement to Fierce Pharma Marketing, said that “due to low public awareness, people living with RKD can face challenges in getting diagnosed and finding support.” That is why the biotech, which is enduring a troubled regulatory path for its as yet unapproved kidney disease asset sparsentan, is teaming up with the IgA Nephropathy Foundation and NephCure Kidney International to launch “RKD & Me.”
This campaign “puts rare kidney disease front and center and further establishes the acronym, RKD,” the company added in its statement to Fierce Pharma Marketing.
It tapped firsthand input from the RKD community gleaned from nationwide listening tours and also allows those living with RKD to share their stories on the new website accompanying the campaign, RKDandMe.com, which “aims to create more awareness and understanding of the unique experiences of people living with RKD,” Travere added.
The website specifically features letters penned by the RKD community to their younger selves recounting their experiences and sharing stories on how RKD intersects within every aspect of their lives.
The letters are the central part of the campaign’s launch and “will continue to shape the multi-year campaign in the future,” the partners said in a release. There is also an #RKDandMe hashtag on social media for people to follow and share their stories.
“By amplifying the personal letters and stories of the RKD community, the RKD & Me campaign will help people living with RKD learn from the experiences of others and find comfort in camaraderie as they navigate their journeys," said Bonnie Schneider, director and co-founder of IgA Nephropathy Foundation, in a release.
Travere had hoped of winning an FDA approval for its kidney disease candidate this year, but those were scuppered last month with the U.S. delaying a decision by three months over concerns about the drug’s safety.
Travere is seeking approval of the drug candidate, the dual endothelin angiotensin receptor antagonist sparsentan, in the treatment of the kidney disease IgA nephropathy.