Resource Portals

Hygeia Foundation  Hygeia is a global community using "new technologies" to assuage the hurt, the grieving and the sorrow experienced by families who are experiencing the pain associated with caring for a critically or chronically ill child and to help you advocate for your child and your families' needs. Hygeia helps you connect to communities of children worldwide who are afflicted with debilitating disorders. It is an amazing link to healing created by Dr. Michael Berman, Clinical Professor of Obstetrics and Gynecology at Yale University medical School.  

It supports parents, children with chronic disease and siblings and opens to all a world of healing and support.

Nemours Foundation Nemours is dedicated to providing treatment and support services to acutely and chronically ill children. It owns and operates the Alfred I. Dupont Hospital for Children in Wilmington, Delaware and several other sites.  It can connect you to a wonderful site called KidsHealth.Org and conducts ongoing medical education for pediatric residents.   KidsHealth has a section for parents, kids and teens.  

Children's Disability Lists of Lists connects parents to almost every condition. Some areas of interests include Gtube, Christian Parents/Special Kid, DADVOCAT for Dads of children with special needs.

Children's Virtual Hospital connects parents, children and teens with information by topic, body system, Kids Talk to Kids, Kid-Friendly Anatomy, Kids' Guide to Intensive Care, pain management, etc.

KD Kids connects you to education, information and support for you, your child and acquaints you with members of the healthcare team.

HUS Scientific Update

Chronic Renal Insufficiency Cohort Study (CRIC)

Pain and Chronic Kidney Disease

For years hospitals have taken a patient's vital signs - temperature, blood pressure, respiration, and pulse. A few years ago a fifth vital sign was added - pain level. Every person has a right to adequate pain control. We all have on occasion suffered both acute and chronic pain and in order to live life to the fullest that pain must be addressed. Below is the Pain Care Bill of Rights.

Pain Care Bill Of Rights
As a Person with Pain, You Have:

The right to have your report of pain taken seriously and to be treated with dignity and respect by doctors, nurses, pharmacists and other healthcare professionals.
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The right to have your pain thoroughly assessed and promptly treated.
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The right to be informed by your doctor about what may be causing your pain, possible treatments, and the benefits, risks and costs of each.
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The right to participate actively in decisions about how to manage your pain.
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The right to have your pain reassessed regularly and your treatment adjusted if your pain has not been eased.
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The right to be referred to a pain specialist if your pain persists.
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The right to get clear and prompt answers to your questions, take time to make decisions, and refuse a particular type of treatment if you choose.
 

Although not always required by law, these are the rights you should expect, and if necessary demand, for your pain care.

The American Pain Foundation

Mission Statement

The mission of the American Pain Foundation is to improve the quality of life of people with pain by providing practical information for patients, raising the public's awareness and understanding of pain, and advocating against barriers to effective treatment.

Brave Kids

Brave Kids is an Award Winning website that provides access to a host of medical, psychological and practical information for both parents and children with both acute and chronic life threatening illnesses.