Sources for additional information and assistance:
Patient resources:
- Hereditary Amyloidosis Facts
- hATTR Compass Patient Guide
- A Closer Look At haTTR Amyloidosis
- Hereditary ATTR (hATTR) amyloidosis – An introduction for patients, caregivers and families.
- Amylose héréditaire de la transthyrétine (ATTR héréditaire) – Introduction à l’intention des patients, des aidants et des familles. (French)
- Amiloidosi ATTR ereditaria (ATTRh) – Un’introduzione per i pazienti, gli assistenti e le famiglien. (Italian)
- Amiloidose ATTR hereditária (ATTRh) – Uma apresentação para doentes, cuidadores e famílias. (Portugese)
- Hereditary ATTR (hATTR) amyloidosis: A guide for caregivers
- Amylose héréditaire de la transthyrétine (ATTR héréditaire): Guide à l’intention des aidants (French)
Other Canadian websites and support groups:
- The Canadian Amyloidosis Support Network
- Canadian Organization for Rare Disorders
- Rare Disease Information and Resource Centre
- Orphanet (Canada page)
Clinical trials:
- Health Canada’s Clinical Trials Database
- Clinical Trial Information: visit clinicaltrials.gov
- My Amyloidosis Pathfinder (MAP) Clinical Trial Finder
US websites and support groups:
- Amyloidosis Foundation
- Amyloidosis Support Groups
- Amyloidosis Research Consortium
- Global Genes
- National Organization for Rare Disorders (NORD)
- NORD Rare Disease Support Community
- Genetic and Rare Diseases Information Center (GARD)
- Amyloidosis Awareness Facebook Page
- hATTR Change the Course Website
- hATTR Bridge Website
- Amyloidosis Support Network by Ben’s Friends Facebook Page
International websites and support groups:
- Australia: amyloidosis.com.au
- Brazil: abpar.org.br
- Finland: www.suomenamyloidoosiyhdistys.fi
- France: www.amylose.asso.fr
- France: www.amyloidosisalliance.org
- Germany: www.heidelberg-university-hospital.com/diseases-treatments/endocrine-and-metabolic-diseases/amyloidosis
- Israel: israblog.nana10.co.il/blogread.asp?blog=530202
- The Netherlands: amyloidose.nl
- Portugal: www.paramiloidose.com
- Spain: AMILO (Asociación Española de Amiloidosis)
- Sweden: www.igp.uu.se/research/clinical_experimental_pathology/per_westermark/?languageId=1
- United Kingdom: www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre
- United Kingdom: www.amyloidsupportgroup.co.uk/
- United Kingdom: ttramyloidosis.uk
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