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Review for Amyloidosis Support Group, Inc., Wood Dale, IL, USA

Rating: 5 stars  

I have amyloidosis, a very rare condition. I developed it as a result of having an incurable blood cancer. It is one of a number of types of amyloidosis which can be fatal. Many people are not diagnosed until they have end stage disease because it is so rare and can present with such a variety of symptoms. Muriel Finkel, who oversees the Amyloidosis Support Group, Inc., runs an amazing not-for-profit which assists people with all kinds of amyloidosis. She responds immediately to requests for assistance, be it finding a doctor who is an expert treating people with the disease, or referring patients to the latest research articles and drug studies, or providing other kinds of support. In addition, she organizes meetings in various cities in the United States and invites leading physicians to speak at the meetings and help patients figure out how to get the best care available. Since Muriel is so knowledgable and dedicated to the cause, doctors have been willing to donate their time to this group of patients, many of whom are coping with the most serious aspects of the disease which may require a stem cell transplant, and/or a heart or kidney transplant. Amyloidosis is an orphan disease. There are no statistically significant studies or huge organizations to assist patients and caregivers navigate their way. Muriel Finkel and Amyloidosis Support Group, Inc, does a phenomenal job in helping patients and their families cope with this devastating illness.

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