Amyloidosis Web Sites

About Amyloidosis Web Sites

2006-07-02T08:46:00.000-07:00

This site contains information from various web sites about amyloidosis and kidney disease that have been reformatted and reorganized. There are numerous links to the original documents.

The goal is to make the information easier to find and to allow the sharing of information between users.

This is a very big undertaking and you can help me help others. Please add your comments or questions to any topic that concerns you. If you know of additional resources please include links to them.

I am especially looking for:

Experiences of amyloidosis and kidney disease patients
Experiences of family members of amyloidosis and kidney disease patients
Experiences of amyloidosis and kidney disease caregivers
Experiences of amyloidosis and kidney disease physicians
Experiences of amyloidosis and kidney disease researchers

Information about specific amyloidosis and kidney disease products
Information about specific amyloidosis and kidney disease treatments
Information about specific amyloidosis and kidney disease medications
Information about hospitals specializing in the treatment of amyloidosis and kidney disease
Information about clinics specializing in the treatment of amyloidosis and kidney disease
Information about physicians specializing in the treatment of amyloidosis and kidney disease

If possible please include:

Links to amyloidosis and kidney disease websites
Links to chronic kidney disease websites
Links to amyloidosis and kidney disease blogs
Links to amyloidosis and kidney disease news articles
Links to amyloidosis and kidney disease research articles

Amyloidosis Australia

2005-07-05T08:48:00.000-07:00

Amyloidosis Australia was created by a family effected by amyloidosis. They have done an excellent job of compiling information about the condition.

Here's what they have to say about their site:

This website is run by a family in Australia affected by Amyloidosis, a rare protein folding disorder, and we hope to provide information, support and advice for anyone in Australia also affected by Amyloidosis. It is a purely personal venture, and we are not funded or run by any external source. We do not aim to provide in-depth information on Amyloidosis itself - this has been expertly covered in other websites.

Amyloidosis and Kidney Disease

2005-07-02T09:36:00.000-07:00

Amyloidosis and Kidney Disease

This site contains information from government publications about amyloidosis and kidney disease that have been reformatted and reorganized. There are numerous links to the original documents.

Sam and Jan Teauge's Amyloidosis Site

2005-07-02T09:29:00.000-07:00

Sam and Jan Teauge's Amyloidosis Site

Welcome to our site! We established it to let you know a little more about us, and to keep you up to date on our journey. We hope that better awareness of Amyloidosis will lead to earlier diagnosis for those who have it. The love of God and the support of our family and friends are the most important ingredients in our recipe for success. As you pray for us, also pray for all of those affected by this disease. There are some great people out there fighting the same battle. Thanks for the prayer, thanks for the care.

Amyloidosis Research Foundation

2005-07-02T09:27:00.000-07:00

Amyloidosis Research Foundation

This foundation has been established to raise funds for research to find the cause for amyloidosis and develop more effective means of diagnosis and treatment.

The foundation is dedicated to all who have passed on from amyloidosis, amyloid suffers, their caregivers and family members: and also to the researchers who have dedicated their efforts to overcome this disorder.

Pedro Soares Amyloidosis Web Site

2005-07-02T09:20:00.000-07:00

Pedro Soares Amyloidosis Web Site

Pedro Soares is an individual with amyloidosis. The site is in Portuguese with an English translation.

עמילואידוזיס

2005-07-02T09:17:00.000-07:00

עמילואידוזיס

Amyloidose - Seite

2005-07-02T09:14:00.000-07:00

Amyloidose - Seite

This site is in German.

Dieser Aufstellungsort ist auf Deutsch.

Association Amylose Infos

2005-07-02T09:12:00.000-07:00

Association Amylose Infos

This site is in French.

Cet emplacement est en français.

NORD - National Organization for Rare Disorders, Inc.

2005-07-02T09:07:00.000-07:00

NORD - National Organization for Rare Disorders, Inc.

This site has a comprehensive list and descriptions of types of amyloidosis.

Amyloidosis at Mayo Clinic

2005-07-02T09:06:00.000-07:00

Amyloidosis at Mayo Clinic

Mayo Clinic is one of a few medical centers in the United States studying the diagnosis and treatment of amyloidosis. More than 1,000 patients with amyloidosis were treated at Mayo Clinic in 2004. As a result of many years of research, Mayo Clinic offers a number of new therapies that are not widely available. These treatments range from stem cell transplantation, an area in which Mayo Clinic is among the most experienced in the world, to medications (not available commercially) which have shown promise in testing in Mayo Clinic's research laboratories. Mayo Clinic continually develops new clinical trials for the treatment of amyloidosis.

No one therapy is appropriate for all people. Different specialists work together to ensure that each person receives therapy appropriate for the extent and type of his or her disease. Each treatment team includes a specialist experienced in caring for people who have amyloidosis.

The Amyloid Treatment and Research Program at Boston Medical Center

2005-07-02T09:04:00.000-07:00

The Amyloid Treatment and Research Program at Boston Medical Center

The Amyloid Treatment and Research Program at Boston Medical Center began in 1960 under the direction of Dr. Alan S. Cohen and is currently under the leadership of Dr. Martha Skinner. The Program is unique in its combination of basic research with patient care. This focus has led to scientific discoveries as well as to advances in treatment. The Amyloid Clinical Team is comprised of an outstanding group of physician scientists at Boston Medical Center, and the Program has achieved international recognition as a leading center for amyloidosis research and patient care.

The amyloid clinical team is unique in its multi-disciplinary approach to the patients. Each sub-specialist spends a significant proportion of his or her time dealing specifically with amyloidosis and the group meets at frequent intervals to coordinate its findings and to determine the best treatment for individual patients. Our goal is not only to evaluate and treat the amyloid diseases, but also to educate physicians and provide support to patients and their families with this disease. Every year hundreds of inquiries from all over the world are dealt with at our center, many of which result in a subsequent visit by the patient.

Over the years, more than 300 publications have resulted from our work, many in leading journals including the New England Journal of Medicine, Annals of Internal Medicine, Blood, Journal of American College of Cardiology, and others. These articles range from general review articles and specific clinical articles to basic scientific advances in amyloid research. A selection of recent publications and their abstracts can be viewed by clicking on the appropriate link.

As a further tribute to our program, the International Amyloidosis Society encouraged us to begin the first journal dedicated to amyloid research, entitled Amyloid. The journal is edited at Boston Medical Center and is published quarterly.

The NHS National Amyloidosis Centre (UK)

2005-07-02T09:02:00.000-07:00

The NHS National Amyloidosis Centre

The NHS National Amyloidosis Centre is the only centre in the UK specialising in amyloidosis and is affiliated with the Centre for Amyloidosis and Acute Phase Proteins, one of the world's leading centres for amyloid research. The unit was formerly based at Hammersmith Hospital and moved into new purpose built premises at the Royal Free and University College Medical School in November 1999. The Centre has “state of the art” clinical and research facilities, and a team of highly qualified clinical, research and support staff.

The Amyloid Online Support Group

2005-07-02T09:01:00.000-07:00

The Amyloid Online Support Group

This is a listserv group.

Amyloidosis Support Network

2005-07-02T08:58:00.000-07:00

Amyloidosis Support Network

The Amyloidosis Support Network's primary function is to "link those affected by amyloidosis to further support resources" and increase public and professional awareness so that the disease can be detected earlier and properly treated. Learn more about The Amyloidosis Support Network (A 501c3 Non-Profit Organization).