Patient Resources

Patient Support Groups

Online Amyloid Mailing List – This is an unmediated discussion list for patients, family, friends, researchers, and physicians to discuss clinical and non-clinical issues and advances in amyloidosis treatment. Topics of discussion include patient experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices and alternatives. The principal focus is expected to be information and reassurance for patients and loved ones.

Amyloidosis Foundation – The Amyloidosis Foundation links those affected by amyloidosis to experienced medical and emotional support resources and promotes awareness among the public and professionals so that the disease can be recognized earlier and appropriately treated.

Amyloidosis Support Group – ASG is a non-profit organization that leads support meetings for patients and families in many cities in the United States and some other countries. ASG’s Yahoo Support Group online E-Mail: http://health.groups.yahoo.com/group/AmyloidosisSupportGroups/

 

Podcasts

Amyloid Diagnosis - In this podcast Dr. David Seldin discusses how doctors diagnose amyloidosis (e.g., common signs and symptoms, organ involvement, and diagnostic testing.)

Amyloid Types - In this podcast Dr. David Seldin discusses the four major types of amyloidosis.

Amyloid Treatments - In this podcast Dr. David Seldin discusses treatment options for patients with amyloidosis.

Amyloid Research - In this podcast Dr. David Seldin discusses laboratory and clinical research programs at the Boston University Amyloid Program.

Rare Disease Feature (WAER 88.3 FM) - This radio segment aired on WAER 88.3 FM (Syracuse, New York) on the NPR show “All Things Considered” on February 29 and March 1, 2012. The segment features two patients diagnosed with systemic amyloidosis – who share their story from diagnosis to treatment and recovery – and includes an interview with Dr. David Seldin.