The Alpha-1 Association is now the Alpha-1 Foundation

Resources for Alpha-1 Children and Parents

Informational Resources

 

Alpha-1 Foundation - Liver Disease

  • Provides information on Alpha-1 associated liver disease in children and adults

 

Children's Liver Disease Foundation

  • A British national charity dedicated to fighting all liver diseases of childhood. It fights by funding pioneering research, providing education and giving professional, caring support to the families and patients.


Transplant Resources

 

  • The UNOS Organ Center is available 24 hours a day, every day of the year, to facilitate organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S.  

 

  • UNOS provides patient education resources free of charge on their website. You can also view the pdf of this resource below by clicking on the title below. To order these and other educational resources free of charge, please click here.

 

What Every Kid Needs to Know about Organ Transplants

    • This booklet contains information to make the transplant process easier to understand for elementary-age children in need of an organ transplant.View PDF.

 


Assistance Programs

 

Financial Help for Children

    • Resources from the government's Centers for Medicare and Medicaid Services

 

Insure Kids Now

    • A national campaign to link the nation's 10 million uninsured children--from birth to age 18--to free and low-cost health insurance. Many families simply don't know their children are eligible.

 

Children's Liver Association for Support Services [CLASS]

    • CLASS is a nonprofit organization dedicated to serving the emotional and financial needs of families coping with childhood liver disease and transplantation.


Community Links


Alpha Liver E-Group

    • Help, advice and support for people and families affected by (or anyone who has an interest in) Alpha-1 Antitrypsin Deficiency Liver Disease. To join, send an e-mail to: ALPHA-LIVER-subscribe@egroups.com


Alpha Liver List

 

MUMS National Parent-to-Parent Network

    • A national network whose mission is to help parents who have a child with any disorder make connections with other parents whose children have the same or similar condition


Research Programs

 

Cholestatic Liver Disease Consortium

    • Provides support and information for children and families with rare cholestatic liver diseases.

 

Childhood Liver Disease Research and Education Network (ChiLDREN) Natural History Study

 

Ask most parents of children who have Alpha-1 what they want most, and they answer that they want a cure for Alpha-1. Our entire Alpha-1 community wants a cure, but did you know that you and your Alpha-1 kids can help?

Yes, you and your children can help. Participate in research!

 

Currently, the Childhood Liver Disease Research and Education Network (ChiLDREN) is conducting the largest natural history study of infants, children, and young adults up to the age of 25, who have SZ or ZZ Alpha-1 Antitrypsin Deficiency and liver involvement. ChiLDREN is a collaborative team of doctors, scientists, nurses, research coordinators, medical facilities, and patient support organizations. One of the primary goals of ChiLDREN is to provide a way for patients to join with doctors and researchers by participating in research studies. The greater the collaboration between doctors and patients/their families, the more we can learn about Alpha-1. This important first step is necessary if we are to find new/ better treatments and potentially a cure.

 

The Alpha-1 natural history study is aimed at acquiring information and data that will provide a better understanding of Alpha-1. Participants are asked to allow study personnel to obtain information from medical records and an interview, and to collect blood, urine, and tissue samples when clinically indicated, in order to understand the cause of Alpha-1 liver disease and to improve the diagnosis and treatment of children with Alpha-1. All of the information obtained is confidential, and no names or identifying information are used in the study.

 

There are 16 participating centers throughout the United States/Canada that are working together to improve the lives of children and families dealing with rare liver diseases like Alpha-1. Infants, children, and young adults with Alpha-1, who receive their medical care at one of the participating ChiLDREN centers, may be eligible to enroll in current ChiLDREN studies. Those who receive their medical care at other clinical facilities may also be eligible for ChiLDREN studies, if they are able to visit a ChiLDREN center for an annual visit.

 

To find out more about participating in the this research study, please contact one of the participating centers to obtain more information. A list of participating centers is available here: http://childrennetwork.org/centerschildren.html

 

Participating in research is a personal decision. Here are some suggestions for deciding if participating is the right choice for your family or your child(ren):

 

1) Make an informed decision which matches your family's philosophy and your child's or children's needs.

 

2) Review the ChiLDREN website for more information: http://childrennetwork.org/

 

3) Read the ChiLDREN brochure: http://childrennetwork.org/families/children_brochure.pdf

 

4) Take a look at the study information available at: http://clinicaltrials.gov/ct2/show/NCT00571272?term=NCT00571272&rank=1