Amyloidosis

Common Name(s)

Amyloidosis

Amyloidosis is a term for diseases caused by the misfolding of the amyloid protein. Deposits of these insoluble fibrillar proteins build up in tissues and lead to organ disfunction. This is a rare and serious disease. Early and accurate diagnosis is necessary as treatments are specific to the different types. The main types are: AL or "primary"; AA or "secondary"; FAP or "familial" (hereditary); and localized. Evaluation by physicians who specialize in diagnosis and treatment is critical.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Amyloidosis" for support, advocacy or research.

Amyloidosis Support Groups Inc.

• To form Amyloidosis Support Groups where needed and to have all Amyloidosis Support Groups be self-sustaining through donations (general, memorial, note cards and other awareness items) • To fund and maintain libraries of educational materials for all support groups. • To fund group projects that will help in spreading awareness, co-sponsor Amyloidosis treatment and research fundraisers, and encourage grand rounds be held on amyloidosis at local hospitals and help to encourage money be raised for such projects. • To purchase and provide awareness items such as pins, wristbands and other similar items for meetings, memorials, and fundraisers To help finance the annual educational retreat for training new and current group leaders and facilitators • To maintain a 24/7 toll free “Hot/Help Line” to answer all support inquires. • To provide on-going maintenance and informational updates on the A.S.G. web-site ( http://www.amyloidosissupport.com ). • To promote, monitor

Last Updated: 19 Nov 2012

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General Support Organizations

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How do you compare to others with this condition?

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Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Amyloidosis" for support, advocacy or research.

Amyloidosis Support Groups Inc.

• To form Amyloidosis Support Groups where needed and to have all Amyloidosis Support Groups be self-sustaining through donations (general, memorial, note cards and other awareness items) • To fund and maintain libraries of educational materials for all support groups. • To fund group projects that will help in spreading awareness, co-sponsor Amyloidosis treatment and research fundraisers, and encourage grand rounds be held on amyloidosis at local hospitals and help to encourage money be raised for such projects. • To purchase and provide awareness items such as pins, wristbands and other similar items for meetings, memorials, and fundraisers To help finance the annual educational retreat for training new and current group leaders and facilitators • To maintain a 24/7 toll free “Hot/Help Line” to answer all support inquires. • To provide on-going maintenance and informational updates on the A.S.G. web-site ( http://www.amyloidosissupport.com ). • To promote, monitor

http://www.amyloidosissupport.com

Last Updated: 19 Nov 2012

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General Support Organizations

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Amyloidosis" returned 1381 free, full-text research articles on human participants. First 3 results:

Localized insulin-dependent amyloidosis with scar-tissue formation.
 

Author(s): Friederike Damm, Sergij Goerdt, Astrid Schmieder

Journal: J. Am. Acad. Dermatol.. 2014 Oct;71(4):e160-2.

 

Last Updated: 15 Sep 2014

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Analysis of free serum light chains in patients suffering from multiple myeloma complicated by light-chain amyloidosis.
 

Author(s): Lidia Usnarska-Zubkiewicz, Jadwiga Hołojda, Jakub Dębski, Anna Zubkiewicz-Zarębska, Ewa Zagocka, Kazimierz Kuliczkowski

Journal: Adv Clin Exp Med. ;23(4):531-8.

 

AL amyloidosis is an acquired systemic disease in which a pathologic amorphous substance produced as a result of abnormal protein metabolism is deposited in the extracellular space of various tissues.

Last Updated: 29 Aug 2014

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Targeted treatment for amyloidosis.
 

Author(s): Miriam E Pepys-Vered, Mark B Pepys

Journal: Isr. Med. Assoc. J.. 2014 May;16(5):277-80.

 

Last Updated: 1 Jul 2014

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Amyloidosis" returned 127 free, full-text review articles on human participants. First 3 results:

Update on treatment of light chain amyloidosis.
 

Author(s): Shameem Mahmood, Giovanni Palladini, Vaishali Sanchorawala, Ashutosh Wechalekar

Journal: Haematologica. 2014 Feb;99(2):209-21.

 

Light chain amyloidosis is the most common type of amyloidosis as a consequence of protein misfolding of aggregates composed of amyloid fibrils. The clinical features are dependent on the organs involved, typically cardiac, renal, hepatic, peripheral and autonomic neuropathy and soft ...

Last Updated: 5 Feb 2014

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Lichen amyloidosis.
 

Author(s): Barry Ladizinski, Kachiu Cecilia Lee

Journal: CMAJ. 2014 Apr;186(7):532.

 

Last Updated: 16 Apr 2014

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Effect of infliximab induction therapy on secondary systemic amyloidosis associated with Crohn's disease: case report and review of the literature.
 

Author(s): Aldis Pukitis, Tatjana Zake, Valerija Groma, Evalds Ostrovskis, Sandra Skuja, Juris Pokrotnieks

Journal: J Gastrointestin Liver Dis. 2013 Sep;22(3):333-6.

 

Secondary systemic (AA) amyloidosis is reported as a serious complication that occurs in long-standing Crohn's disease (CD), with an incidence of 0.3-10.9%. Various therapeutic approaches using medicines and elemental diet have been recommended, but still there are no established ...

Last Updated: 30 Sep 2013

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

The Effect of Diflunisal on Familial Transthyretin Amyloidosis
 

Status: Recruiting

Condition Summary: Amyloidosis

 

Last Updated: 26 Aug 2014

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Last Updated: 10 Nov 2014

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Safety and Efficacy Study of Doxycycline/UrsoDeoxyCholicAcid on Disease Progression in ATTR Amyloidosis
 

Status: Recruiting

Condition Summary: Transthyretin Amyloidosis; Cardiomyopathy

 

Last Updated: 13 Dec 2013

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