Welcome - Amyloidosis Community

What is Amyloidosis ?

Amyloidosis is a rare systemic disease caused by deposits of amyloid protein fibrils in one or more organs, causing the organs to malfunction. There are three main types: Primary Amyloidosis (AL), Secondary Amyloidosis (AA) and Familial Amyloidosis (FAP), which is the genetic form.                                             

Source: Participating patient organizations visible below

Amyloidosis Resources

More members stories

Latest Member Stories

Familial Amyloidosis Finnish Type - Texas

by TXkaren published 3 months ago

Four members of our family are diagnosed with familial amyloidosis Finnish type. My father (age 73) has lost all function in his facial muscles. ...

My Mom who is 68

by Tammy221 published 3 months ago

I have only been able to find limited information and I am desperate to understand this disease.

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.