DIGITAL SPOTLIGHT LAUNCH - C3 GLOMERULOPATHY (C3G) AND IMMUNE COMPLEX MEMBRANOPROLIFERATIVE GLOMERULONEPHRITIS (IC-MPGN)
RARE Revolution Magazine
Accessible publication for the Rare Disease Community
Introducing this week’s Digital Spotlight. Sponsored by Apellis Pharmaceuticals , Inc., this time, we will be sharing the experiences of patients, caregivers, advocacy organisations and HCPs with the glomerular diseases C3 glomerulopathy (C3G) and immune complex membranoproliferative glomerulonephritis (IC-MPGN). Read all the articles here.
What are glomerular diseases? What are the impacts of these rare diseases? Learn more and help spread the word with our downloadable infographic here.
For Lindsey Fuller and her family, their search for answers has spanned generations. Witnessing the devastating impact of kidney failure firsthand, they grappled with an elusive diagnosis that had robbed them of loved ones. But Lindsey's persistence led to a discovery—a rare genetic mutation that had been silently passed down, now shedding light on her family's medical history. Armed with this knowledge, Lindsey is driven to uncover the full scope of this hereditary burden, determined to forge a brighter future for those who will follow. Read here.
Having lived with a form of kidney disease for most her life, Margaret has approached her new rare diagnosis head-on and deals with the daily challenges as they present themselves. From finding the right specialists to managing the physical, financial and lifestyle impacts, her story highlights the complexities of living with a little-known disease (C3G) and the resilience required to overcome the obstacles. Read here.
NephCure has been leading the charge to empower those with rare protein-spilling kidney diseases, also known as glomerular diseases, for over two decades. By funding groundbreaking research, providing comprehensive patient support and driving policy change, NephCure is revolutionising care for these complex and often overlooked rare kidney diseases. Read here.
As a nephrology nurse practitioner with nearly a decade of experience, Katerina Jones has the privilege of caring for patients with a wide range of kidney disorders. Among the most complex and challenging conditions she has encountered are the glomerular diseases, particularly C3 glomerulopathy (C3G) and immune complex membranoproliferative glomerulonephritis (IC-MPGN). From the frontline, Katerina shares insights from her perspective as a healthcare professional guiding individuals through diagnosis and beyond. Read here.
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