INFORMATION FOR FAMILIES

The Childhood Liver Disease Research Network strives to provide information and support to individuals and families affected by liver disease through its many research programs.

The links below provide useful information for parents and patients about the diseases we study:

Disease PDF in English PDF en Español
Alagille syndrome PDF PDF
Alpha-1-antitrypsin deficiency PDF PDF
Bile acid synthesis and metabolism defects PDF PDF
Biliary Atresia PDF PDF
Cystic Fibrosis liver disease PDF PDF
Idiopathic neonatal hepatitis PDF PDF
Mitochondrial hepatopathies PDF PDF
Progressive familial intrahepatic cholestasis PDF PDF

For information on clinical studies related to these diseases, click here.


Information PDF in English PDF en Español
ChiLDReN Brochure PDF PDF
Neonatal Liver Disease Brochure PDF PDF
About the Liver PDF PDF
Frequently Asked Questions PDF PDF
Glossary PDF PDF


Patient Support Groups

Patient support groups exist to address the needs of patients and their families, as well as provide information and support. These groups are listed by alphabetical order.



Alagille Syndrome Alliance

10500 SW Starr Drive
Tualatin, OR 97062
(503) 885-0455
email: alagille@alagille.org
web: www.alagille.org
The Alagille Syndrome Alliance (ALGSA) is a not-for-profit organization dedicated to supporting families challenged by Alagille Syndrome (ALGS), increasing awareness of ALGS, and encouraging research efforts on behalf of the ALGS community Our mission is mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by ALGS. The ALGSA celebrates our special community and builds a better life for those with ALGS through education, collaboration, and research.
AlphaNet

3300 Ponce de Leon Boulevard
Coral Gables, FL 33134
(800) 577-ANET (577-2638)
web: www.alphanet.org
AlphaNet, Inc. was founded in 1995 with a mission to provide disease management to people with Alpha-1 Antitrypsin Deficiency (Alpha-1). Currently, AlphaNet follows over 5,000 people with Alpha-1, and employs 49 regional AlphaNet coordinators. All of AlphaNet’s coordinators have been diagnosed with Alpha-1.

AlphaNet’s disease management program is comprehensive and structured to meet the specific needs of people diagnosed with Alpha-1. AlphaNet is proud to work with the providers of the four augmentation therapy products approved by the U.S. Food and Drug Administration (FDA). The four products are Prolastin-C® from Grifols, Zemaira® from CSL Behring, Aralast NP™ and Glassia® from Baxalta.

Since it was founded in 1995, AlphaNet has contributed over $46 million to support people with Alpha-1.
Alpha-1 Foundation

3300 Ponce de Leon Blvd
Coral Gables, FL 33134
Main Telephone Number: 305-567-9888 or 877-228-7321
Main Fax Number: 305-567-1317
email: bbennett@alpha1.org
web:
http://www.alpha1.org/
The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three people who were diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1.

The Foundation is committed to finding a cure for Alpha-1 and to improving the lives of people affected by Alpha-1 worldwide.

The Foundation has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), people affected by Alpha-1, and the pharmaceutical industry to expedite the development of improved therapies.

The Foundation has invested more than $54 million to support Alpha-1 research at 100 institutions in North America, Europe, the Middle East and Australia.

The Foundation also participates in industry and government liaison groups and develops strategic alliances with government, industry and other national and international health and research organizations.
American Liver Foundation

39 Broadway, Suite 2700
New York, New York 10006
(800) GO LIVER (465-4837)
web: www.liverfoundation.org
The American Liver Foundation is a national, voluntary not-for-profit organization. It has been dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education and advocacy since 1976.
American Lung Association

55 W. Wacker Drive, Suite 1150
Chicago, IL 60601
(800) LUNG-USA (586-4872)
web: www.lungusa.org
The American Lung Association (ALA) is a nationwide health organization. Since 1904, the American Lung Association has been fighting lung disease through education, comunity service, advocacy and research, and through seeking better treatments and cures. The ALA can also help you find information on smoking cessation programs.
Canadian Cystic Fibrosis Foundation

2323 Yonge Street, Suite 800
Toronto, Ontario, M4P 2C9
416-485-9149 / 1-800-378-2233 (Toll free from Canada only) (telephone)
416-485-0960 / 416-485-5707 (fax)
web: www.cysticfibrosis.ca
 
Children's Liver Association for Support Services (CLASS)

PO Box 186
Monaca, PA 15061
(877) 679-8256
(724) 888-2568
email: info@classkids.org
web: www.classkids.org
The Children’s Liver Association for Support Services is an all-volunteer group. CLASS was founded out of the recognized need for an organization dedicated to addressing the emotional, educational and financial needs of families with children affected by liver disease and liver transplantations.

The primary goals of CLASS are to:
  • Provide and distribute educational materials about pediatric liver disease.
  • Provide a support network for families of children with liver disease via telephone hotline, newsletters and educational seminars.
  • Provide direct financial assistance to families in need directly related to their child's liver disease.
  • Fund seed grants for research into causes, diagnosis, detection, treatment and prevention of pediatric liver diseases.
  • Sponsor educational seminars on medical and social issues regarding liver disease.
  • Increase public awareness about the importance of organ donation.
  • Solicit funds from private and public sources, and administer and disburse such funds to further our mission.
CLASS is incorporated as a nonprofit organization in the state of California and is recognized as a tax-exempt charitable organization under the Internal Revenue Code as described in Section 501©3.
Children's Liver Disease Foundation

36 Great Charles Street
Birmingham
B3 3JY
United Kingdom
+44 (0) 121 212 3839
+44 (0) 121 212 4300
email: info@childliverdisease.org
web: www.childliverdisease.org
 
Cystic Fibrosis Foundation

6931 Arlington Road, 2nd floor
Bethesda, Maryland 20814
(301) 951-4422
email: info@cff.org
web: www.cff.org
The Cystic Fibrosis Foundation is a nonprofit donor-supported organization, focusing on the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. The Foundation is the leading organization in the United States devoted to cystic fibrosis.
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

(301) 435-2988
web: www.niddk.nih.gov
The National Institute of Diabetes and Digestive and Kidney Diseases conducts and supports research on many of the most serious diseases affecting public health. The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines.
National Organization for Rare Disorders (NORD)

55 Kenosia Avenue
Danbury, CT 06810
(203) 744-0100
(800) 999-6673 (voicemail only)
web: www.rarediseases.org
NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Progressive Familial Intrahepatic Cholestasis (PFIC)

email: PFICII@pfic.org
web: http://pfic.org
PFIC.org is a website that was built by and for PFIC patients and families. It was extablished to provide a resource for those with new diagnoses and for those continuing to search for treatments and solutions to the challenges of PFIC. Our mission is to improve the lives of patients and families worldwide affected by Progressive Familial Intrahepatic Cholestasis, PFIC. We support research programs, provide educational materials, match families for peer support, and participate in advocacy opportunities.
United Mitochondrial Disease Foundation

8085 Saltsburg Road, Suite 201
Pittsburgh, PA 15239
(412) 793-8077
(412) 793-6477
web: www.umdf.org
The UMDF mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families. UMDF supports scientific collaboration and family networking through international symposia and is building an endowment to sustain research through the millennium.
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