June 1, 2012

Resources

We are pleased to be able to offer pediatric transplant resources for all of our families in their time of need.  Some of these resources may require the aid of a social worker or equivalent on your transplant team.  If you see an organization that you would like to nominate for this growing list of resources, please submit to contact@transplantfamilies.org.

Transplant Organizations
Donate Life
Transplant Living
COTA – Children’s Organ Transplant Association
AOTA – American Organ Transplant Association
NFT – National Foundation for Transplant
TRIO – Transplant Recipients International Organization

Waiting List and Statistical Information
UNOS – United Network for Organ Sharing (U.S. Waiting List)
OPTN – Organ Procurement and Transplantation Network (U.S. Waiting List and Statistical Information)
Trillium Gift of Life Network – Canadian Wait List and Statistics

Children’s Hospitals
  • List of all the children’s hospitals in the United States and some international children’s hospitals as well.
  • Rankings as listed by US News and World Reports on the best children’s hospitals in the United States sorted by specialty.
  • Transplant centers in the United States and statistical information on transplant outcomes.
Informational Articles
Pediatric Heart Transplants – A Guide for Patients and Families – Brought to you by Children’s Cardiomyopathy Foundation and Pediatric Heart Transplant Study
NORD – The National Organization of Rare Diseases can give you information on some of the conditions that eventually lead to transplant

 

Online Transplant Support Groups
Children’s Cardiomyopathy Foundation – Cardiomyopathy often leads to transplant.  CCF offers a message board for families afflicted with cardiomyopathy and subsequently transplant as well.
Heart Transplant Families – Facebook site connecting families dealing with transplant.
Mended Little Hearts – National Support Program for families of children with heart defects, disease or transplant.  Chapters available in most states.
Sisters by Heart – HLHS (Hypoplastic Left Heart Syndrome) is one of the leading causes of heart transplantation (source: Kids  Health).  Sisters by Heart is an amazing resource that serves the families of HLHS and advocates for cardiac families nationwide.
Pulmonary Hypertension Association (PHA) – Pulmonary hypertension (PH) is a rare, debilitating disease in which high blood pressure in the arteries of the lungs can lead to right heart failure and ultimately transplant.  PHA’s mission is to find ways to prevent and cure PH, and to provide hope to the community through support, education, research, advocacy and awareness.

 

Support for Family Caregivers
Family Caregiving – Get support in caregiving for your child in good times and medically challenging times.

 

Financial Help

2-1-1 –

Scholarships

The Adam St Martin Foundation gives college bound teens that have been affect by organ donation as a recipient or donor scholarships for college.

211.org – 2-1-1 is a free and confidential service that helps people across North America find the local resources they need. They’re here for you 24 hours a day, seven days a week with help from around the United States for everything from housing and utilities, health, food and even job assistance.

Housing Help

Air Transport Help
Angel Flight – Pilots who donate their time and aircraft to help those in need.

National Patient Travel Center – Provides long distance medical air transport

Food

Meal Train -organize meals for a friend after a birth, surgery or illness
Food tidings – Give family and friends the opportunity to help out with a food sign up sheet.
Care Calendar – Web based system to organize meals and other help for families during a time of illness or life changing event
Lotsa Helping Hands – Easily organize meals and help for friends & family in need
Angel Food Ministries – A months worth of food for a family of 4 for about $30

 

Transplant Camps
Transplant Living – maintains a list of camps for transplant patients.  Although there are more out there than listed here.

 

When you need hope
Beads of Courage – A wonderful program that offers beads for seriously ill children for each procedure they go through.  Ask your hospital if it participates in this wonderful program.
HopeKids – An organization that offers outings, events and hope to kids with life threatning illnesses or have had life threatning illness (one of which is transplant) in select states.
Project Linus – Giving hope and security through donated blankets
Renal Support Network –  RSN serves the kidney community by instilling health, happiness, and hope through education, advocacy, and awareness…one person at a time.  This is a group that serves both adults and pediatrics.  They hold a prom annually for teens with kidney disease.  A toll free support line is also available so that patients can talk to someone.
Heart Heroes – Providing superhero capes to all kids affected by congenital heart disease.
Support Groups
Transplant Living – Has an updated list of support groups in various states.  There are many more available through hospitals online and on Facebook

 

Associations

 

Wish Organizations
Make a Wish – – Make a wish foundation

 

International Information
Transplant Kids – Everything pediatric transplant in the UK.

 

Transplant related products
Transplant Hero LogoTransplant Hero -Transplant Hero is a beautifully created App that helps transplant patients deal with the seemingly impossible task of taking their immunosuppression medications in a timely fashion.  Look for this fun way to remember your medications for free in the App Store.