http://hometown.aol.com

Patient treated in 1994 and other stories of survivors

http://www.myeloma.org

Survivor stories

http://www.acor.org

This site contains survivor stories provided by ACOR (Association of Cancer On-line Resources)

http://hem.passagen.se

Discussion of Amyloidosis in Sweden.

Stanford University School of Medicine, Bone Marrow Transplantation

Provides the various forms of BMT as the "first-line" form of therapy, for patients with leukemia, lymphoma, Hodgkins disease, multiple myeloma, amyloidosis, breast cancer, aplastic anemia, severe combined immunodeficiency syndrome and certain inherited blood disorders.

Center for the study of the amyloidosis of Pavia, Italy

The Center for the study of the amyloidosis of Pavia, Italy. Il Centro per lo studio delle amiloidosi di Pavia. Il centro lavora in stretta collaborazione con più di 80 medici operanti.

Association Française contre l'Amylose

Association Française contre l'Amylose Président : Monsieur Yves GHIRON

The Centre for Amyloidosis and Acute Phase Proteins

Royal Free and University College Medical School Royal Free Hospital Rowland Hill Street London, England NW3 2PF

Arkansas Cancer Research Center

University of Arkansas for Medical Sciences - Provides details on clinical trials along with contact information by conducting a site search on "amyloidosis".

Boston University Medical Center

Amyloid Treatment and Research Center - Boston University School of Medicine

Cleveland Clinic Cancer Ctr.

The Cleveland Clinic Myeloma Research Program focuses on new drug development, as well as studying the effect of the immune system on tumor biology to modify its behavior. This site will guide you through a list of the different research activities, and updates for the current trials. Amyloidosis is included within the Myeloma research program.

Mayo Clinic

Explains Amyloidosis very well and provides a host of other medical information, ways to contact the Mayo, drug interactions and low sodium diets.

Memorial Sloan Kettering

MSK has an Amyloidosis treatment program. Its web site is currently under construction

Scripps Clinic

Scripps provides treatment for Amyloidosis and does conduct some clinical trials. Trial # 97-056 New investigational drug for amyloidosis.

University of Tennessee

University of Tennessee Medical Center

Indiana University School of Medicine

Amyloid Research Group Indiana University School of Medicine Department of Pathology and Laboratory Medicine Indianapolis, Indiana USA Dr. Benson specializes in Familial Amyloidosis.

American Society of Hematology

Patient links offer free access to review articles from Hematology, the Education Program Book from our annual meeting, as well as a “Find a Hematologist” feature to help match patients with practicing hematologists in their area.

MayoClinic.com Amyloidosis Information

Offers an overview of amyloidosis, including symptoms, causes, risk factors, and treatment information.

Immunology - an Introduction

This link is quite good in explaining why there is such diversity in how Amyloidosis presents in a patient population. Especially "B Cells and Antibodies" (Lecture 7)

SSDI Helpful Hints

Applying for social security disability and SSI benefits can be difficult due to how long a claim may take and the high chance of being denied. But those who are denied disability can win benefits by utilizing the appeals process. To increase the chances of winning, applicants should learn about the system and file an appeal when a claim is denied.

American Self Help Clearinghouse

The Self-Help Sourcebook Online is a free, searchable database that includes information on 800+ national, international and demonstrational model self-help support groups, ideas for starting groups, and opportunities to link with others to develop needed new national or international groups. This database uses information provided by the American Self-Help Clearinghouse, a department of the Behavioral Health Center of Saint Clare's Health Services in Denville, NJ, "which publishes The Self-Help Sourcebook

International Myeloma Foundation

THE INTERNATIONAL MYELOMA FOUNDATION Have a growing amount of information and support, it is a large organization set up to fund research and provide information and support.

http://www.stemcellselection.com

This is an excellent site dealing with Stem Cell Transplantation with Dose-Intensive chemotherapy. It lists other support groups, medical terminology that patients ought to know as well as some information on insurance issues.

Association Amylose_Infos

AMYLOSE-INFOS (Français) was founded on June 17, 2000 by André, Olivier and Vivien BRUNEL, in memory of their beloved wife and mother Dominique, who died of amyloidosis at 46, on Dec. 13, 1999. The main objective of AMYLOSE-INFOS is to collect information currently available on amyloidosis, and to be an amyloidosis clearing-house for those who wish to access such information. This site's primary language is French and also offers German, Italian and Spanish translations.

UK Myeloma Forum

The UK Myeloma Forum is an organisation of people working to improve the outlook for patients with myeloma and related diseases such as amyloidosis. The UKMF is a registered charity (no. 1082702). Thier aim is to promote clinical trials, treatment guidelines, collaborative research, and eductation.

Familial Mediterranean Fever

For sufferers of Familial Mediterranean Fever which also causes AA amyloidosis. The site is sponsored by a group of AMERICAN people called MELUNGEONS (muh-LUNGE-uhns rhymes w/ dungeons)who believe they have a Mediterranean origin with Native American, European white, and most likely, black ancestry.

Amyloid Menu

HARVARD NEUROLOGY WEB FORUM An email message board for amyloidosis

American Online Cancer Resources

Amyloid list archives

Familial (Hereditary) Amyloidosis

This is an email support group targeted specifically to assist all persons in the understanding of Familial (Hereditary) Amyloidosis Polyneuropathy disease

RxList

Search The RxList Drug Database and Keyword Search for any referenced terms (examples: bone marrow depression [or] tricyclic cardiac [or] proz alcohol) This is a 'Google type search' of the RxList site.

Macular Amyloidosis

Welcome to MacularAmyloidosis.org "MA"

http://w1.901.telia.com

Swedish University paper on Familial Amyloidosis

National Organization for Rare Disorders

The National Organization for Rare Disorders (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.

http://edcenter.med.cornell.edu/

Cornell University A very complete description of Amyloidosis

http://www.ncbi.nlm.nih.gov/

US Government Health Information

http://www.neosoft.com

Explanation of Biopsies

http://www.neosoft.com

Explanation of Blood Tests

http://jama.ama-assn.org/

Journal of the American Medical Association (JAMA). JAMA, which began publication in 1883, is an international peer-reviewed general medical journal.

http://www.nejm.org/

The New England Journal of Medicine

eMedicine Journal, February 11 2002, Volume 3, Number 2

This particular site provides an excellent overview of "Amyloidosis, Immunoglobulin-Related" (AL) from the Departments of Medicine and Pathology, Division of Hematology, New York University School of Medicine

Attorney's Medical Services

Attorney's Medical Services published on-line article titled "Medical Information, The Internet, and You". It contains a comprehensive set of links to reputable medical information sources as well as links to various search engines and metasearch engines. The Internet continually offers more opportunities to find information on medical topics. However, with the expanding resources comes a larger challenge for net-researchers to find the information they are seeking. The more experience the researcher gains the more proficient they become in finding pertinent data.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Your Kidneys and How They Work - This is an excellent overview for patients with kidney involvement and will help you discuss renal issues with your nephologist.

Understanding The Immune System

This is an excellent, patient friendly, discussion of how the immune system functions provided courtesy of the National Cancer Institute. For the amyloidosis patient, it is important to understand what is happening inside your body. It allows you to better communicate with your doctor which usually leads to better treatment.

Blood, The Journal of The American Society of Hematology

Blood, The Journal of The American Society of Hematology (ISSN 0006-4971), is published 25 times (in two volumes) per year by The American Society of Hematology (ASH) with assitance from Stanford University using an unrestricted grant from Searle Oncology. They have a collection of articles published by researchers and physicians regarding amyloidosis. This material is very technical.

MEDLINEplus Drug Information

This is an excellent site for gaining a better understanding of your medications along with a dictionary of medical terms & conditions. MEDLINEplus provides up-to-date, quality health care information from the world’s largest medical library, the National Library of Medicine at the National Institutes of Health.

Neurochem

Neurochem is a biopharmaceutical company founded in 1993 in Kingston, Ontario, Canada. They focus on the development and commercialization of breakthrough technologies for the treatment of amyloid-related diseases. This site has many interesting facts and demographics about the disease.

http://www.ncbi.nlm.nih.gov

This link refers you to some information on the "Gelsolin form of Familial Amyloidosis" (also known as the "Finnish variety of Amyloidosis") which is extraordinarily rare except in Finland. The disease manifests itself early with proteinuria by the teens, and amyloid nephropathy with nephrotic syndrome by the 20s. There are several other links at this site for further information.

Amyloid - The Official Journal of the International Society of Amyloidosis

This journal (The Journal of Protein Folding Disorders) is the first and only journal devoted entirely to amyloid research and clinical developments throughout the world. It offers a broad range of topics reflecting the multi-disciplinary nature of amyloid studies.

http://clinicaltrials.gov/

The National Institutes of Health announced the launch of the first phase of a consumer-friendly database with information on more than 4,000 federal and private medical studies involving patients and others at more than 47,000 locations