The Alliance
Alliance’s Members
Associations from all around the world. Our members are the patient organisations that make the Alliance a truly global voice in the fight against amyloidosis.
Each of them supports patients and families in their own country, and together they share knowledge, resources and campaigns across borders.
Where we are
A network across the world
Each point marks a country where a member association fights amyloidosis. Click a point to open the organisations based there.
Associations from all around the world
The members of the Alliance
Click on an organisation to read its presentation, visit its website and find its social media accounts.
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ABeA, Asociación Balear en Amiloidosis
Spain
Read more: ABeA, Asociación Balear en AmiloidosisABeA is the Balearic Amyloidosis Association, a non-profit organisation dedicated to improving the quality of life of people affected by amyloidosis and their families.
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ABPAR, Associação Brasileira de Amiloidose
Brazil
Read more: ABPAR, Associação Brasileira de AmiloidoseFounded in 1989, ABPAR – Associação Brasileira de Amiloidose is a non-profit organization dedicated to supporting patients and families by promoting awareness, education, and advocacy for amyloidosis. Led by volunteers, patients, and caregivers, ABPAR…
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AFCA, Association Française contre l’Amylose
France
Read more: AFCA, Association Française contre l’AmyloseThe Association Française contre l’Amylose brings together patients, families and carers affected by amyloidosis in France. It informs and supports newly diagnosed patients and works alongside health professionals to shorten the path to diagnosis.
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Amilo
Spain
Read more: AmiloAmilo is a patient organization working for people living with amyloidosis and their families in Spain, and a member of the Amyloidosis Alliance.
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Amybel, Amyloidosis Association Belgium
Belgium
Read more: Amybel, Amyloidosis Association BelgiumAmybel is a young but fast-growing patient association for people with all kinds of Amyloïdosis in Belgium. Our focus is on giving support and information to patients, raising awareness about Amyloïdosis and through our…
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Amyloïdose Nederland, Dutch Amyloidosis Foundation
Netherlands
Read more: Amyloïdose Nederland, Dutch Amyloidosis FoundationThe Dutch Amyloidosis Foundation (Stichting Amyloïdose Nederland) represents the interests of patients with amyloidosis. This is achieved by providing reliable information about the disease to both patients and professionals, organizing meetings for patients and…
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Amyloidosis Austria, Leben mit Amyloidose
Austria
Read more: Amyloidosis Austria, Leben mit AmyloidoseLeben mit Amyloidose – Amyloidosis Austria is a nationwide, patient-led organization supporting people living with amyloidosis and their families. Founded in 2019, we are committed to raising awareness, promoting earlier diagnosis and providing reliable…
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Amyloidosis Support Groups
United States
Read more: Amyloidosis Support GroupsAmyloidosis Support Groups is a patient organization working for people living with amyloidosis and their families in the United States, and a member of the Amyloidosis Alliance.
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Amyloidosis UK
United Kingdom
Read more: Amyloidosis UKAmyloidosis UK is a patient-led charity connecting people, sharing knowledge, advocating for those affected by amyloidosis and raising awareness across the UK.
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ASVEA
Spain
Read more: ASVEAASVEA is a patient organization working for people living with amyloidosis and their families in Spain, and a member of the Amyloidosis Alliance.
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ATTR Amyloidosis All Ireland
Ireland
Read more: ATTR Amyloidosis All IrelandATTR Amyloidosis All Ireland is a patient organization working for people living with amyloidosis and their families in Ireland, and a member of the Amyloidosis Alliance.
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Australian Amyloidosis Network
Australia
Read more: Australian Amyloidosis NetworkAustralian Amyloidosis Network is a patient organization working for people living with amyloidosis and their families in Australia, and a member of the Amyloidosis Alliance.
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Canadian Amyloidosis Support Network
Canada
Read more: Canadian Amyloidosis Support NetworkCanadian Amyloidosis Support Network is a patient organization working for people living with amyloidosis and their families in Canada, and a member of the Amyloidosis Alliance.
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FaMY Norrbotten
Sweden
Read more: FaMY NorrbottenFaMY Norrbotten supports patients and families living with hereditary transthyretin amyloidosis in northern Sweden, where the disease is particularly present. The association organises meetings between patients and relays research news to its community.
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FAMY, Associazione Italiana Amiloidosi Familiare Onlus
Italy
Read more: FAMY, Associazione Italiana Amiloidosi Familiare OnlusFAMY is a patient organization working for people living with amyloidosis and their families in Italy, and a member of the Amyloidosis Alliance.
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FAP-eV
Germany
Read more: FAP-eVFAP-eV is a patient organization working for people living with amyloidosis and their families in Germany, and a member of the Amyloidosis Alliance.
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FFAM
Mexico
Read more: FFAMFFAM is a patient organization working for people living with amyloidosis and their families in Mexico, and a member of the Amyloidosis Alliance.
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FUNCOLEHF, Fundación Colombiana para Enfermedades Huérfanas
Colombia
Read more: FUNCOLEHF, Fundación Colombiana para Enfermedades HuérfanasLa Fundación Colombiana para Enfermedades Huérfanas (FUNCOLEHF) is a nonprofit foundation dedicated to improving the quality of life and life expectancy of people and families affected by rare diseases, including Amyloidosis. We work hand…
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Hereditary Amyloidosis Hwanwoohoe
South Korea
Read more: Hereditary Amyloidosis HwanwoohoeHereditary Amyloidosis Hwanwoohoe is a patient organization working for people living with amyloidosis and their families in South Korea, and a member of the Amyloidosis Alliance.
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Israel Amyloidosis Association
Israel
Read more: Israel Amyloidosis AssociationThe Israel Amyloidosis Association was founded in 2016 by a group of patients living with AL Amyloidosis, out of a sense of partnership and responsibility and a belief the patients and their families should…
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NZAPA, New Zealand Amyloidosis Patient Association
New Zealand
Read more: NZAPA, New Zealand Amyloidosis Patient AssociationThe New Zealand Amyloidosis Patient Association (NZAPA) is a not-for-profit organisation dedicated to improving the lives of people affected by all forms of amyloidosis through awareness, education, advocacy and patient support. It provides trusted…
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TTR Amyloidosis Canada
Canada
Read more: TTR Amyloidosis CanadaTTR Amyloidosis Canada is a patient organization working for people living with amyloidosis and their families in Canada, and a member of the Amyloidosis Alliance.
Our members are the national patient associations that make up the network. They are distinct from our partners, the companies and institutions that support the work of the Alliance.
Become a member
Is your organisation missing from this list?
Patient organisations fighting amyloidosis anywhere in the world are welcome to apply. Organisations created less than a year ago join as associate members while they find their feet.
How it works
- Send us a short request using the form below.
- We arrange a conversation with someone from the Alliance, to hear about your organisation, your projects and where you are today.
- We then ask you for a short presentation of your organisation (3–4 lines), your website address, links to your social media accounts, a presentation brochure in PDF format if you have one, and your logo in high-quality PNG format, preferably with a transparent background.
Membership application
Ask to join the Alliance
Tell us about your organisation. Someone from the Alliance will get back to you to arrange a conversation.