AL amyloidosis

Title

Other Names:

Primary systemic amyloidosis; Amyloidosis AL; Light chain amyloidosis; Primary systemic amyloidosis; Amyloidosis AL; Light chain amyloidosis; Systemic AL amyloidsis; Primary AL amyloidosis; Primary systemic AL amyloidosis; Amyloidosis primary systemic; Primary amyloidosis (Formerly) See More

Summary Summary

AL amyloidosisis the most common form of amyloidosis, a group of disorders in which an abnormal protein called amyloid builds up in tissues and organs. The signs and symptoms of AL amyloidosis vary among patients because the build up may occur in the tongue, intestines, muscles, joints, nerves, skin, ligaments, heart, liver, spleen, or kidneys. To diagnose AL amyloidosis, healthcare professionals use blood or urine tests to identify signs of amyloid protein and a biopsy to confirm the diagnosis. Treatment may include chemotherapy directed at the abnormal plasma cells, stem cell transplantation, or other treatments based on which symptoms have developed.^[1]
^[2]

Last updated: 7/17/2015

Treatment Treatment

The resources below provide information about treatment options for this condition. If you have questions about which treatment is right for you, talk to your healthcare professional.

Management Guidelines

The Amyloid Treatment and Research Program at Boston University School of Medicine provides information on the treatment of different forms of amyloidosis.

Do you have updated information on this disease? We want to hear from you.

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are related to AL amyloidosis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Organizations Organizations

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Amyloidosis Australia, Inc.
131-133 Napier Street
St. Arnaud,
Victoria, 3478
Australia
Telephone: 03 9001 9312
E-mail: ellen@amyloidosis.com.au
Website: http://www.amyloidosis.com.au/
Amyloidosis Foundation
7151 N. Main Street
Suite 2
Clarkston, MI 48346
Toll-free: 877-AMYLOID (1-877-269-5643)
E-mail: info@amyloidosis.org
Website: http://www.amyloidosis.org/
Amyloidosis Support Groups Inc.
232 Orchard Drive
Wood Dale, IL 60191
Toll-free: 866-404-7539
Telephone: 847-350-7540
E-mail: info@amyloidosissupport.com , muriel@amyloidosissupport.com
Website: http://www.amyloidosissupport.com

Social Networking Websites

RareConnect has an online community for patients and families with this condition so they can connect with others and share their experiences living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders).

Do you know of an organization? We want to hear from you.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

The Mayo Clinic provides information on the diagnosis and treatment of amyloidosis.
Amyloidosis Awareness is an illustrated booklet for patients and physicians developed by Amyloidosis Support Groups Inc. Versions of the booklet are also available in Spanish and Portuguese.
MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), conducts and supports research on a broad spectrum of diseases affecting public health. Click on the link to view information on this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
Immunoglobulin-Related Amyloidosis
Primary Systemic Amyloidosis
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
PubMed is a searchable database of medical literature and lists journal articles that discuss AL amyloidosis. Click on the link to view a sample search on this topic.

Selected Full-Text Journal Articles

The Orphanet Journal of Rare Diseases has published an article with information on this condition. This journal is affiliated with the Orphanet reference portal for information on rare diseases and orphan drugs.

News & Events News & Events

News

National DNA Day Reddit "Ask Me Anything" (AMA) Series
April 11, 2018
The XVIth International Symposium on Amyloidosis
May 31, 2017

NCATS Co-Sponsored Conferences

XIV International Symposium on Amyloidosis Sunday, April 27, 2014 - Friday, May 2, 2014
Location: Indianapolis, Indiana
Description: One important goal is to foster interactions between investigators who do not meet regularly outside of this event. Through this conference, experts can share unpublished scientific and clinical information about rare diseases that are hard to treat. A second crucial goal is to stimulate interest in a new generation of investigators by providing generous support for at least 10 junior-level researchers to attend the meeting, giving out awards for the most promising clinical research, the best poster, and the best oral presentation by young investigators, and providing childcare options.

Contact: Rebekah S. Rasooly, Ph.D.(301) 594-6007rrl85i@nih.gov

Co-funding Institute(s): National Institute of Diabetes and Digestive and Kidney Diseases, Office of Rare Diseases Research

Related Diseases Related Diseases

The following diseases are related to AL amyloidosis. If you have a question about any of these diseases, you can contact GARD.

Hereditary amyloidosis

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

Is it known if Chromosome X or Chromosome 16 are a factor in amyloids? See answer
What are risk factors for AL amyloidosis? See answer

Have a question? Contact a GARD Information Specialist.

References References

AL Amyloidosis. Amyloidosis Foundation. June 30, 2015; http://www.amyloidosis.org/facts/al/. Accessed 7/17/2015.
Dugdale DC. Primary amyloidosis. MedlinePlus. January 1, 2013; http://www.nlm.nih.gov/medlineplus/ency/article/000533.htm.

Do you know of a review article? We want to hear from you.

You can help advance
rare disease research! You can help advance rare disease research!