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Patients - Sites of Interest

The following Internet addresses contain information created, published, maintained, or otherwise posted by institutions or organizations independent of ASGCT. ASGCT does not endorse, approve, certify, or control these Internet addresses and does not guarantee accuracy, completeness, efficacy, timeliness, or correct sequencing of information located at such addresses. Use of any information obtained from such addresses is voluntary, and reliance on such information should only be undertaken after an independent review of its accuracy, completeness, efficacy, and timeliness.

Reference to any specific commercial product, process, or service by trade name, trademark, service mark, manufacturer, or otherwise does not constitute or imply endorsement, recommendation, or favoring by ASGCT. 

Clinical Trial Information
The U.S. National Institutes of Health, through its National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies. Before searching, you may want to learn more about clinical trials and more about this Web site. Check often for regular updates to ClinicalTrials.gov. 

FACT  Allied Learning Center
FACT’s Allied Learning Center is a collaborative effort between FACT and AABB, ASBMT, ASFA, ASHI, CAP, ISCT, NETCORD, NMDP, PACT, and others to provide a centralized resource for organizations to quickly and easily obtain online modules applicable to their operations and/or training needs.

Human Genome Project Information
Provides basic information on what gene therapy is, how it works, the current status of gene therapy, and recent developments in the field of gene therapy.

National Human Genome Research Institute's Glossary of Genetic Terms
The National Human Genome Research Institute created a glossary of genetic terms to help people without scientific backgrounds understand the terms and concepts used in genetic research.

National Institute of General Medical Sciences

National Institutes of Health - Office of Biotechnology Activities (OBA)
Since ASGCT does not provide referrals or information on specific gene trials. Such information is available through the National Institutes of Health - Office of Biotechnology Activities (OBA)

National Cancer Institute

National Institute of General Medical Sciences: Science Education Genetics

 

Foundations and Patient Advocacy Groups

The following list includes various disease specific foundations and patient advocacy groups.

Alliance for Cancer Gene Therapy (ACGT)
The Mission of ACGT is to support the extraordinary potential offered by cell and gene-based therapies to accelerate effective and safe treatment of all types of cancer.

Alpha-1 Association

The ALS Association

American Cancer Society

Cooley's Anemia Foundation

Cystic Fibrosis Foundation

Families of Spinal Muscular Atrophy

Fanconi Anemia Research Fund, Inc.

Genetic and Rare Diseases Information Center (GARD)

Hemophilia Federation of America

The Leukemia & Lymphoma Society

March of Dimes

Muscular Dystrophy Association

National Brain Tumor Society

National Parkinson Foundation

Parkinson's Disease Foundation

Spinal Muscular Atrophy Foundation

The Stop ALD Foundation

World Federation of Hemophilia