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Other names people use for this condition
  • Fibrolamellar variant of hepatocellular carcinoma
  • Fibrolamellar hepatocellular carcinoma
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Hepatocellular carcinoma (fibrolamellar variant)
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Fibrolamellar carcinoma is an uncommon malignant tumor that originates in the liver. This variant of hepatocellular carcinoma differs from conventional hepatocellular carcinoma in aetiology (cause), demographics, condition of the affected liver, and tumor markers.[1] This entity typically occurs in young adults (ages 20 to 40) with no underlying hepatitis or cirrhosis. In addition, the serum levels of alpha-fetoprotein are usually not elevated in patients with fibrolamellar hepatocellular carcinoma. Surgery is currently the most effective means of treating and controlling fibrolamellar variant cancer.[2] While there is some debate about the issue, fibrolamellar variant carcinoma may have a better outlook (prognosis) than other forms of liver cancer.[1][3]


References
  1. Bhaijee F, Locketz ML, Krige JE. . S Afr J Surg. 2009;:. Available at: http://www.ncbi.nlm.nih.gov/pubmed/20141066. October 28, 2010.
  2. What is Fibrolamellar?. Fibrolamellar Cancer Foundation. Available at: http://www.fibrofoundation.org/page10.php. Accessed October 28, 2010.
  3. Liver Cancer Overview. American Cancer Society. 2010 Available at: http://www.cancer.org/Cancer/LiverCancer/OverviewGuide/liver-cancer-overview-what-is-liver-cancer. Accessed October 28, 2010.
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 More Detailed Information (Found 4 resources)
 
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates.

  • General

    • Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free.
    • The National Cancer Institute (CIS) provides the most current information on cancer for patients, health professionals, and the general public. You can reach them by calling toll-free at 1-800-422-6237 or by visiting their Web site.
    • The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Hepatocellular carcinoma (fibrolamellar variant). Click on the link to go to OMIM and review these resources.
    • PubMed is a searchable database of medical literature and lists journal articles that discuss Hepatocellular carcinoma (fibrolamellar variant). Click on the link to view a sample search on this topic.
 Organizations (Found 8 resources)
 Umbrella Organizations | Social Networking Websites
Groups providing a wide range of services, supportive resources, and information.

  • Umbrella Organizations

    • American Association for the Study of Liver Diseases
      1001 North Fairfax, Suite 400
      Alexandria, VA 22314
      Phone: 703–299–9766
      Fax: 703–299–9622
      Email: aasld@aasld.org
      Internet: www.aasld.org
    • American Liver Foundation
      39 Broadway, Suite 2700
      New York, NY 10006
      Helpline (24 hours, 7 days a week): 1-800-465-4837 or 1-888-443-7222
      Telephone: 1-800-676-9340 or 212-668-1000
      Fax: 212-483-8179
      E-mail: info@liverfoundation.org
      Web site: www.liverfoundation.org
    • Genetic Alliance
      4301 Connecticut Avenue NW
      Suite 404
      Washington, DC 20008-2369
      Telephone: 202-966-5557
      Fax: 202-966-8553
      E-mail: info@geneticalliance.org
      Web site: http://www.geneticalliance.org
    • National Organization for Rare Disorders (NORD)
      55 Kenosia Avenue
      PO Box 1968
      Danbury, CT 06813-1968
      Toll-free: 1-800-999-6673 (voicemail only)
      Telephone: 203-744-0100
      TTY: 203-797-9590
      Fax: 203-798-2291
      E-mail: orphan@rarediseases.org
      Web site: http://www.rarediseases.org/
  • Social Networking Websites

    • DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare.  Click on the link to learn from their experiences and/or submit your own story.

    • Madisons Foundation
      P.O. Box 241956
      Los Angeles, CA 90024
      Telephone: 310-264-0826
      Fax: 310-264-4766
      E-mail: getinfo@madisonsfoundation.org  
      Web site: http://www.madisonsfoundation.org/  
    • The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
    • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
 Medical Products (Found 1 resource)
 


 Services (Found 2 resources)
 
Links to Web sites that offer services, such as tools to locate specialists, specialty clinics, genetic services, and genetic testing laboratories.

    • Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.

  • Parent Resources

    • The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.
 Scientific Conferences (Found 8 resources)
 Upcoming Conferences | Past Conferences
Resources where you can find information on completed and upcoming scientific conferences and programs.

  • Upcoming Conferences

    • RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012
      Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
      Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: Direct instruction of trainees and new investigators in rare disease research methodology; Development of a reusable curriculum/syllabus on rare disease research methodology; Stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases
  • Past Conferences

    • Genetic Diseases of Children: Advancing Research & Care, March 7, 2011 - March 9, 2011
      Location: Sheraton New York Hotel & Towers, New York, NY
      Description: The New York State Department of Health announced Genetic Diseases of Children: Advancing Research & Care. This national conference brought together the worlds of health, science, government, and industry with the families who look to them for answers.
    • Overcoming Barriers to International Clinical Trials for Rare Cancers , December 10, 2010
      Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
    • The 15th International Symposium on Cells of the Hepatic Sinusoid , August 28, 2010 - September 1, 2010
      Description: Studies on the sinusoidal cells are becoming increasingly important in diverse areas ranging from stem cells, liver development and regeneration, and the pathogenesis of liver diseases such as steatohepatitis, fibrosis, and hepatocellular carcinoma (HCC) to therapeutic approaches including liver transplantation. The target audience was both established and junior investigators, graduate students, and postdoctoral fellows who work in these multidisciplinary fields. The symposium helped develop constructive international collaborations that would result in true advantages for people with rare liver diseases.
    • Workshop on the Etiology of Hepatocellular Carcinoma in the United States, April 17, 2010
      Location: Embassy Suites Hotel - DC Convention Center, Washington, DC
      Description: The goal of this workshop was to assemble investigators of U.S.-based cohort studies in order to form a hepatocellular carcinoma (HCC) pooling project.
    • VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010
      Location: Palais Rouge Convention Center, Palermo, Buenos Aires
      Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
    • Second International Workshop on Cholangiocarcinoma and Hepatocellular Carcinoma, October 6, 2009 - October 7, 2009
      Location: Natcher Conference Ctr., NIH Campus, Bethesda, MD
      Description: The objective of this workshop was to bring together basic researchers, clinicians, epidemiologists, and bioinformaticians worldwide who are experts in liver cancer biology and genetics study to exchange state-of-the-art and late-breaking discoveries. This meeting provided a forum for both intramural and extramural scientists for a better understanding of the latest research findings and implementation of these findings in diagnosis, treatment, and prevention of liver cancer. This meeting also promoted awareness of liver cancer research to the intramural community.
    • The National Institute of Diabetes and Digestive and Kidney Diseases, National Cancer Institute, National Institute of Biomedical Imaging and Bioengineering, Department of Veteran Affairs, and Fogarty International Center sponsored a conference on hepatocellular carcinoma on April 1-3, 2004 to discuss the screening, diagnosis, and management of this type of cancer. You can view the agenda as well as a list of speakers by clicking here.
 Clinical Trials & Research (Found 3 resources)
 
Resources where you may find research studies and clinical trials.

    • ClinicalTrials.gov lists trials that are studying or have studied Hepatocellular carcinoma (fibrolamellar variant). Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
    • NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
  • Patient Registry

    • ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

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