Support

Finding out that you or a family member has a rare genetic disease such as TTR amyloidosis can be worrying and challenging, both physically and emotionally. You are not alone, and you and your family should speak to your physician about any concerns you may have.

Your physician can also provide information about genetic counseling if you are concerned for yourself following the diagnosis of a family member or for members of your family if you have been diagnosed with TTR amyloidosis.

Factsheets

The following downloadable factsheets summarize the information on this website:


Patient groups

There are a number of patient groups who can also provide support and information:

Australia
Amyloidosis Australia - www.amyloidosis.com.au

Brazil
Associação Brasileira de Paramiloidose - www.abpar.org.br

Canada
The Canadian Amyloidosis Support Network, Inc. - www.thecasn.org

Italy
La Società Italiana per l'Amiloidosi - www.amiloidosi.it

The Netherlands
Groningen Unit for Amyloidosis Research & Development (GUARD) - www.amyloid.nl

Portugal
Associação Portuguesa de Paramiloidose - www.paramiloidose.com

Switzerland
Amyloidose PWAS - www.amyloidose.ch

United Kingdom
National Amyloidosis Centre - www.ucl.ac.uk/medicine/amyloidosis/nac

United States
Amyloidosis Foundation - www.amyloidosisresearchfoundation.org
Amyloidosis Support Groups - www.amyloidosissupport.com
Amyloidosis Support Network - www.amyloidosissupportnetwork.org
National Organization for Rare Disorders, Inc. - www.rarediseases.org
The Rare Disease Community - www.inspire.com/groups/rare-disease


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