NephCure’s National Coalition Advocates for Policy Solutions to Improve Rare Kidney Disease Care and Patient Outcomes
NephCure Kidney International is a non-profit organization dedicated to finding a cure for rare kidney diseases, specifically focusing on Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome. These diseases affect thousands of individuals, often leading to kidney failure and the need for dialysis or a kidney transplant. In order to improve care and outcomes for patients with these rare kidney diseases, NephCure has established a National Coalition to advocate for policy solutions at the federal level.
The National Coalition is made up of patients, caregivers, healthcare providers, researchers, and advocates who are passionate about improving the lives of those affected by rare kidney diseases. By working together, the Coalition aims to raise awareness about the challenges faced by patients with FSGS and Nephrotic Syndrome, and to push for policy changes that will improve access to care, treatment options, and research funding.
One of the key issues that the National Coalition is focused on is increasing funding for research into rare kidney diseases. Despite the devastating impact that these diseases can have on individuals and families, they receive far less funding compared to more common conditions like diabetes or heart disease. By advocating for increased research funding, the Coalition hopes to accelerate the development of new treatments and ultimately find a cure for FSGS and Nephrotic Syndrome.
In addition to research funding, the National Coalition is also working to improve access to care for patients with rare kidney diseases. Many individuals struggle to find knowledgeable healthcare providers who are familiar with these conditions, leading to delays in diagnosis and treatment. By advocating for better education and training for healthcare professionals, the Coalition hopes to ensure that all patients receive high-quality care from providers who understand their unique needs.
Furthermore, the National Coalition is pushing for policies that will improve insurance coverage for treatments and medications for rare kidney diseases. Many patients face financial barriers to accessing the care they need, which can have a significant impact on their health outcomes. By advocating for policies that expand insurance coverage and reduce out-of-pocket costs, the Coalition hopes to make treatment more affordable and accessible for all patients.
Overall, NephCure’s National Coalition is dedicated to advocating for policy solutions that will improve care and outcomes for individuals with rare kidney diseases. By raising awareness, mobilizing stakeholders, and working with policymakers, the Coalition is making strides towards a future where all patients with FSGS and Nephrotic Syndrome have access to the care and support they need to live healthy and fulfilling lives.