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The National Organization for Rare Disorders NORD Guides for Physicians #8 Physician’s Guide to
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Document Date: 2012-12-18 11:57:21

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City

Danbury / New York City / Boston / London / /

Company

Amyloidosis Support Groups Inc. / nac/ Other Resources / Amyloidosis Support Network / Amyloidosis Foundation Inc. / Merrill Benson / /

Country

United Kingdom / Congo / United States / /

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Facility

The Mayo Clinic / Boston University Medical Center / National Amyloidosis Center / Memorial Sloan Kettering / University of Indiana / Columbia Presbyterian Hospital / Women’s Hospital / Tufts Medical Center / /

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IndustryTerm

energy / informative Web sites / therapy of the underlying disease / Internet-based patient support organization / treatment of congestive heart failure / /

MedicalCondition

rare diseases / Hodgkin's disease / multiple myeloma / autosomal dominant disease / AL amyloidosis / recurrent syncopal episodes / treatment-related leukemia / multisystem disease / systemic disease / Familial TTR amyloidosis / chronic inflammatory bowel disease / diarrhea / systemic disorder / AA amyloidosis / familial amyloid polyneuropathy / pleural amyloidosis / latter two diseases / heart diseases / Hepatic amyloidosis / significant pulmonary infiltration / rheumatic diseases / chronic inflammatory disease / Secondary (AA) amyloidosis / progressive azotemia / amyloidosis / transthyretin-related familial amyloidosis / macroglossia / TTR amyloidosis / inflammatory protein serum amyloid A / progressive organ dysfunction / info@amyloidosis / Systemic amyloidosis / relapsed disease / Familial amyloidosis / empyema / hypercholesterolemia / Senile amyloidosis / Pleural effusions / autonomic dysfunction / slowly progressive disease / familial amyloidosis Senile amyloidosis / AL cardiac amyloidosis / peripheral neuropathy / isoelectric focusing*** DNA analysis Positive Negative ATTR Consider AA amyloidosis Non-TTR / renal disease / Pulmonary involvement Amyloid deposits / bone marrow biopsy Positive Negative AL amyloidosis / secondary amyloidosis / Proteinuria / congestive heart failure / untreated AL amyloidosis / disease / hoarseness / erectile dysfunction / Periorbital purpura / coughing / Rapidly progressive congestive heart failure / nephrotic syndrome / pain / large recurrent pleural effusions / heart failure / hepatic failure / chronic myelocytic leukemia / overt hypothyroidism / postural hypotension / Cardiac Amyloidosis / B-cell lymphoma / tuberculosis / /

MedicalTreatment

Renal transplantation / Chemotherapy / /

Organization

Tufts Medical Center / Leukemia & Lymphoma Society / National Organization for Rare Disorders NORD Guides for Physicians / University of Indiana / Indianapolis / Boston University Medical Center / National Organization for Rare Disorders / Harvard Medical School / Amyloidosis Foundation / Harvard / Women’s Hospital / Amyloidosis Research Foundation / National Amyloidosis Center / Presbyterian Hospital / /

Person

Donald C. Brockman / Dennis Krysmalski / Rodney H. Falk / Mathew Maurer / /

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Position

Physician / founder / neurologist / cardiologist / /

Product

diflunisal / dexamethasone / /

ProvinceOrState

Alabama / Connecticut / /

Technology

Chemotherapy / electrophoresis / transplantation / /

URL

www.amiloidosi.it / www.brighamandwomens.org/cvcenter/amyloidosis / www.amyloidosis.org / www.amyloidosissupport.com / www.ucl.ac.uk/medicine/amyloidosis/nac / www.bu.edu/amyloid / www.rarediseases.org / www.mayoclinic.org/amyloidosis/index.html / http /

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