The Alliance
About us
The Amyloidosis Alliance is an international coalition uniting patient associations, medical experts, and research institutions around one shared mission: to end the diagnostic odyssey and transform care for amyloidosis patients worldwide.
Born from the conviction that no single organization can win this fight alone, the Alliance turns scattered national efforts into one coordinated global force, pooling knowledge, resources, and the voices of those who live with the disease.
01
Why the alliance exists
A Rare Disease Challenge
Amyloidosis is a group of rare, complex diseases that remain widely underdiagnosed. Symptoms mimic far more common conditions, and expertise is scattered across countries and specialties.
The result is a diagnostic odyssey that can stretch across years, during which irreversible organ damage often occurs.
A Shared International Response
The Alliance was founded to connect isolated efforts into one coordinated, global movement that aligns patient associations, clinicians, and researchers around common goals.
By pooling knowledge and resources across borders, we accelerate diagnosis, broaden access to care, and ensure the patient voice is heard at every level.
02
What we connect
Member associations
24 national patient organizations across 19 countries, sharing one international platform.
Scientific committee
Leading clinicians and researchers guiding the Alliance’s medical priorities and consensus.
Awareness initiatives
Global campaigns, including World Amyloidosis Day, that mobilize the community each year.
Resources & events
Congresses, toolkits, and educational materials tailored to every audience we serve, including World Amyloidosis Day and the international ATTR & AL meeting.
03
How the alliance works
Three coordinated functions turn a network of associations into a single, effective force against amyloidosis.
Coordinate
We align member associations around common goals, sharing best practices and avoiding duplicated effort across borders.
Advocate
We carry the patient voice to health authorities, working toward equitable access to diagnosis and treatment everywhere.
Inform
We translate complex science into clear, trusted resources for patients, families, and healthcare professionals.
04
International presence
From Europe to the Americas and Asia, the Alliance builds a redundant network of expertise, so that no patient is left behind because of geography.
Each member nation contributes local insight to a shared global knowledge base, strengthening diagnosis and care everywhere we operate.
19
Countries
24
Associations
8
Languages
19
Our member associations are spread across 19 countries on every continent.
05
Who we serve
Patient associations
A platform to amplify local impact, share resources, and join a coordinated international movement.
Patients & families
Guidance, community, and recognized centers of excellence to help navigate the journey from diagnosis to daily life.
Healthcare professionals
Diagnostic guidance, clinical resources, and a network of specialists to support faster, more confident recognition.
06
Alliance timeline
2018
Alliance founded
Patient associations from several countries unite to form a single international voice for amyloidosis.
2020
First member network
The network grows to span multiple continents, establishing shared governance and common goals.
2021
World Amyloidosis Day
The first global awareness day on October 26 mobilizes the community around a shared cause.
2023
Scientific committee
A board of leading experts is established to guide the Alliance’s medical priorities and consensus.
2023
First ATTR Meeting in Madrid
The first international ATTR meeting brings the community together in Madrid.
2024
AL Congress
The first congress dedicated to AL amyloidosis is held in Belgium.
2025
AMYLIFE
Launch of AMYLIFE, the first worldwide survey on the daily reality of living with amyloidosis.
2026
International ATTR Meeting in Baveno
The international ATTR meeting is hosted in Baveno, Italy.
2027
First International AL & ATTR Meeting for Patients and Doctors
AL and ATTR congresses merge into a single international congress for the whole community.
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