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.
There are a number of patient groups who can also provide support and information:
Amyloidosis Australia - www.amyloidosis.com.au
Associação Brasileira de Paramiloidose - www.abpar.org.br
The Canadian Amyloidosis Support Network, Inc. - www.thecasn.org
La Società Italiana per l'Amiloidosi - www.amiloidosi.it
Groningen Unit for Amyloidosis Research & Development (GUARD) - www.amyloid.nl
Associação Portuguesa de Paramiloidose - www.paramiloidose.com
Amyloidose PWAS - www.amyloidose.ch
National Amyloidosis Centre - www.ucl.ac.uk/medicine/amyloidosis/nac
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