Support comes in many forms and from many places.
Additional Patient Resources
The Nephrotic Syndrome Foundation works continuously to be a resource for families in this journey. Below we have assembled some helpful links, tips and outside resources across various topics related to Nephrotic Syndrome.
Disclaimer - The Nephrotic Syndrome Foundation does not provide medical guidance of any sort, nor do we take responsibility for information provided herein as part of this website, or through related programming. Any information or assimilation of resources provided should be considered a convenience for our community only. Please verify information independently, and always consult your doctor before making any changes that may impact your care or that of your child.
Clinical Trial Resources - where to find current clinical trials for your child
We are in unprecedented times with the spread of COVID-19. It is a particularly trying time for those caring for a child with Nephrotic Syndrome. Our hearts and prayers are with each of you, as well as those on the front line of this crisis as healthcare workers, first responders and their families.
We have assembled a few resources that may be helpful during this time:
Author Book Read - Journey of a little Nephrotic Syndrome Warrior
B.Hope Partner, Patient Mom and Author, Padhmavathy Neelamegan shares with us a chapter out of her book "Journey of a Little Nephrotic Syndrome Warrior", a children's book inspired by her son Advay's journey, and desire to show others they are not alone. This, and Padhma’s follow on book, “I am NOT my Shape” are both available from Amazon.
In addition to the support we provide, The Nephrotic Syndrome Foundation strives to extend our reach by identifying partner organizations who may provide support and/or services to those battling Nephrotic Syndrome. These partnerships allow us to provide patient families the greatest level of support available.
There with Care
There with Care Bay Area is a local organization dedicated to providing individualized support to help children and families during the critical phase of a medical crisis. Currently, they support families referred to them by hospital social workers at Lucile Packard Children’s Hospital Stanford and UCSF Benioff Children’s Hospital. For more information, see their website at: https://bayarea.therewithcare.org and / or contact the social worker at your child's hospital.
Tu Nidito exists to create a community of acceptance and understanding for children and families in Southern Arizona grieving the diagnosis of a serious medical condition or the death of a loved one. Through one-on-one and group support, Tu Nidito ensures that no child grieves alone. Families with a child diagnosed with Nephrotic Syndrome who live in this geographical area, or family members who have lost a loved one, may be eligible for these support services. Please reach out to them to learn more.