- Developed in collaboration with the rare kidney disease community, RKD & Me aims to amplify the experiences of people living with rare kidney disease.
SAN DIEGO, Nov. 15, 2022 (GLOBE NEWSWIRE) -- Travere Therapeutics, Inc., the IgA Nephropathy Foundation, and NephCure Kidney International today announced the launch of RKD & Me, a new public awareness campaign that spotlights the real stories of people living with rare kidney disease to amplify their unique lived experiences, educate the public, and empower the newly diagnosed. With first-hand input from the rare kidney disease community gleaned from nationwide listening tours, the RKD & Me campaign further establishes the acronym, RKD, and provides a common space for those living with rare kidney disease to share their experiences on RKDandMe.com.
In a world where millions of people live with chronic kidney disease, commonly known as CKD, it is estimated that only 60-80 per 100,000 people in the United States currently live with rare kidney disease (RKD). Due to low public awareness, people living with rare kidney disease can face challenges in getting diagnosed and finding support.
“Rare kidney disease often presents with unique symptoms or no symptoms and can progress to end-stage kidney disease much faster than other forms of kidney disease,” said Kelly Helm, executive director of patient engagement at NephCure Kidney International. “This makes the experiences of people living with RKD substantially different from those with more common forms of CKD.”
As part of the nationwide listening tour, the RKD community shared letters they penned to their younger selves recounting their experiences, offering words of advice and encouragement, and emphasizing the need for RKD to be delineated from other, more common kidney diseases. They also shared stories on how RKD intersects with every facet of their lives – including relationships, parenting, career and day-to-day activities.
“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.
The RKD community’s letters are a focal point of this year’s launch and will continue to shape the multi-year campaign in the future. Anyone with an authentic connection to rare kidney disease is encouraged to submit a letter on RKDandMe.com to support raising awareness of RKD.
“Through the listening tours and the letters, the RKD community shared about the realities of making space in their lives for rare kidney disease, and they also shared their strength, perseverance, and commitment to making their voices heard,” said Eric Dube, president and CEO of Travere Therapeutics. “Along with our partners NephCure and IgA Nephropathy Foundation, we hope the RKD & Me campaign will provide a much-needed platform that recognizes, celebrates, and elevates the unique experiences of people living with RKD."
To check out the powerful words of people living with RKD and submit your own letter, visit RKDandMe.com or follow #RKDandMe on social media.
To learn more about rare kidney diseases and other ways to support people living with RKD, visit IgAN.org and NephCure.org.
About Travere Therapeutics
At Travere Therapeutics, we are in rare for life. We are a biopharmaceutical company that comes together every day to help patients, families and caregivers of all backgrounds as they navigate life with a rare disease. On this path, we know the need for treatment options is urgent – that is why our global team works with the rare disease community to identify, develop and deliver life-changing therapies. In pursuit of this mission, we continuously seek to understand the diverse perspectives of rare patients and to courageously forge new paths to make a difference in their lives and provide hope – today and tomorrow. For more information, visit travere.com.
About IgA Nephropathy Foundation
As the only dedicated patient advocacy group for people affected by IgA nephropathy, the IgA Nephropathy Foundation’s mission is to be a patient-centric organization focused on finding a cure for IgA nephropathy. Using the power of the patient community we are focused on funding research, using patient advocacy to empower our patients, and building a network of support. As a patient-run organization, we will work together with the hope of finding better treatment options and the ultimate cure. By patients, for patients. To learn more, visit www.IgAN.org.
About NephCure Kidney International
NephCure Kidney International’s mission is to accelerate research for effective treatments for nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases, and to provide education and support that will improve the lives of those affected by these conditions. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 50 interventional drug trials for primary glomerular kidney diseases. To learn more, visit www.NephCure.org.
Vice President, Corporate Communications