Today, nearly 100 patient advocates representing the National Kidney Foundation, Alport Syndrome Foundation, PKD Foundation, NephCure Kidney International, and American Association of Kidney Patients are arriving in Washington, D.C. to tell their stories and help show legislators the impact of CKD. Each one of these advocates has been personally affected by CKD, whether it’s as a patient on dialysis or transplant recipient, or as a living donor or caregiver, all know first-hand the devastating toll of kidney disease.
This afternoon, advocates will receive training on how to discuss our legislative priorities to make the most impact on legislators. This year’s legislative priorities are:
- Early Detection and Treatment (H.R. 3867) – which will improve early detection of CKD and promote stronger collaboration between primary care and nephrology practitioners to preserve kidney health and provide them with the resources they need to make measurable improvements in the care of people with CKD.
- The Living Donor Protection Act (H.R. 1270) – which would prohibit discrimination in life, disability or long-term care insurance for living organ donors and protect jobs by adding living donation to the Family Medical Leave Act.
- And appropriating funding to kidney disease research and other programs – These programs include the CDC’s National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP), the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and Health Resources and Services Administration’s (HRSA) Division of Transportation and Bureau of Primary Care.
Advocates will also receive training on how to speak with their legislators, tell their patient stories and how to use statistics about the local impact of CKD to convince their Representatives and Senators that this is a national health priority which needs urgent attention.
Please help us in our mission by writing your legislators. You can also support the advocates while they are in DC by tweeting a photo of yourself with a message about CKD. See this guide for ideas!
Follow us on Facebook and watch our Facebook live featuring NKF’s Kid-Ambassador, Angelica Hale, a ten-year-old singing sensation and kidney recipient of America’s Got Talent. Fame! Angelica will interview Members of Congress and ask them about how they can help make kidney disease a national priority! Tune in between 3:00 and 4:00 p.m. EST.
Visit the Summit website to learn more about the event, view legislative materials, see photos from last year, or write your legislators.
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