Welcome parents and caregivers!
Chronic illness of any kind in children is very difficult for both parents and children. This section on our website is dedicated to helping you and your child find support and learn about pediatric and adolescent kidney disease.
e-Newsletter
All AAKP members have the opportunity to sign-up for our bi-monthly e-newsletter, AAKP's Pediatric Kidney Pals! The e-newsletter contains AAKP news, updates on legislative information in the kidney community affecting patients/families, current articles and issues for pediatric and adolescent kidney patients, human interest stories, supportive articles and resources for parents and family members, kidney-friendly recipes approved by little eaters and much more!
List of Summer Camps
Click below for a list of summer camps that your pediatric kidney patient may be interested in attending! Camps are listed in order by State. We will update as we get new camp information. Please send updates to [email protected].
Helpful Pediatric Resources
- Transplant Families Pediatric Transplant Conference 2021 Sessions
- Pediatric Chronic Kidney Disease Risk Calculator
- What Every Parent Needs to Know - A Guide When Your Child Needs a Transplant - This guidebook for parents of pediatric candidates and recipients was developed by the OPTN/UNOS Patient Affairs Committee, with help from other volunteers inside and outside the UNOS volunteer system. It was vetted by the transplant community for accuracy and relevance.
- Keeping it Renal: Global Cuisine for Kids - Children with kidney disease have very special diet and nutrition needs. In this cookbook, patients and families of Children's National Hospital share some of their favorite kidney-friendly recipes.
- TransplantLiving: Children - This UNOS link provides an toolkit for parents, and complements What Every Parent Needs to Know.
- "Guidance on Pediatric Transplant Recipient Transition and Transfer" - This OPTN/UNOS clinically-focused guidance document was developed to give providers some basic best practices on pediatric transition to adulthood. As you know, this is an area of concern to parents (and providers!)
-
In support of AAKP’s Pediatric and Rare Disease Initiatives, we are pleased to offer the AAKP Cystinosis Patient Education and Activity Scholarship Program (click to read more) for those affected with cystinosis.
Articles & WebinarS
Here are some of AAKP’s most recent articles/webinars on Kidney Disease and Kids. You can also use the search box to search for key words on subjects that most interest you.
AAKP's 3-Part Series of Healthline Webinars on Pediatric Kidney Patients:
Part 1: Tips for Parents and Other Care Givers on How to Support Your Pediatric Kidney Patient
Part 2: What to Expect When Your Child Starts Dialysis
Part 3: Growing Up As a Kidney Patient: Transitioning Into Adult Care
More Articles:
Is This Where I Leave You? By Kelly Cline
Why I'm a Pediatric Kidney Patient Advocate, By Jim Myers
A Mother’s Story...Worrier to Warrior, By Emily Payne
Meet Pediatric Nephrologist, Dr. Ken Sutha and Learn about New Pediatric Hypertension Guidelines
AAKP Ambassador Mary Baliker shares her story with AAKP Pediatric Kidney Pals readers….
Grayson Lives On - Potter's Syndrome, By Kent Bressler
Back to School: Problems Faced by Pediatric Kidney Patients and their Caregiver, By Jim Myers