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

Diagnosis of Cutaneous Amyloidosis

by Lhlrberg published 9 days ago
No comment

I'm a 39 year old, mother of 3. I have been suffering from this skin disease for about 15 years but just recently diagnosed. It began after my firs...

Things like this only happen to other people!

by tanewman published 3 months ago
No comment

When I was 64, having sold my business and retiring, I was looking forward to having the time to get in great shape from running and lifting weight...

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.