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

Remembering Cinzia

by remazu1 published 2 months ago

From one day to the next one, Cinzia and her partner's lives were totally changed. They were a couple who loved traveling, walking, mountain trekki...

Familial Amyloidosis Finnish Type - Texas

by TXkaren published 8 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. ...

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.