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.
Built on the conviction that no single organization can address these challenges alone, the Alliance connects national efforts through international cooperation, sharing knowledge, resources and the perspectives of people affected by the disease.
01
Why the alliance exists
A Rare Disease Challenge
Amyloidosis is a group of rare, complex diseases that remain widely underdiagnosed. Symptoms can resemble those of much more common conditions, while expertise is distributed across different specialties and healthcare systems.
This can lead to a diagnostic journey lasting several years, with a risk of progressive and potentially irreversible organ damage.
A Shared International Response
The Alliance was founded to connect national initiatives and bring patient organizations, healthcare professionals, researchers and other stakeholders together around shared goals.
By sharing knowledge and resources across borders, we work to support earlier diagnosis, improve access to care and strengthen the patient voice in healthcare, research and policy discussions.
02
What we bring together
Member associations
24 patient organizations across 19 countries, connected through one international alliance.
Scientific committee
Clinicians and researchers providing scientific and medical expertise to inform the Alliance’s work.
Awareness initiatives
Global campaigns, including World Amyloidosis Day, that mobilize the community each year.
Resources & events
International meetings, educational resources and practical tools designed for different audiences across the amyloidosis community.
03
How the alliance works
Three complementary functions help our network work collectively and increase its impact.
Coordinate
We bring member organizations together around shared priorities, enabling them to exchange experience, share good practices and develop joint initiatives.
Advocate
We bring patient perspectives into discussions with health authorities and other stakeholders, advocating for timely diagnosis, appropriate care and equitable access to treatment.
Inform
We translate complex science into clear, trusted resources for patients, families, and healthcare professionals.
04
International presence
Across Europe, the Americas, Asia and beyond, the Alliance connects patient organizations and expertise across borders, helping to share knowledge and strengthen support across different settings.
Each member organization brings local knowledge and experience to the network, helping identify common challenges and share approaches across countries.
19
Countries
24
Associations
8
Languages
19
Our member organizations are currently present in 19 countries across several regions of the world.
05
Who we serve
Patient associations
A network to share experience and resources, collaborate across borders and strengthen the work of patient organizations nationally and internationally.
Patients & families
Guidance, community, and recognized centers of excellence to help navigate the journey from diagnosis to daily life.
Healthcare professionals
Access to educational resources, scientific information and connections with the wider amyloidosis community.
06
Alliance timeline
2017
First Amyloidosis ATTR meeting for patients and doctors
2018
Alliance founded
Patient associations from several countries unite to form a single international voice for amyloidosis.
2019
Second Amyloidosis ATTR meeting for patients and doctors
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.
2021
Third Amyloidosis ATTR meeting for patients and doctors
2023
Scientific committee
The Scientific Committee is established to provide scientific and medical expertise and support the Alliance’s work.
2023
Fourth Amyloidosis ATTR meeting for patients and doctors
The first international ATTR meeting brings the community together in Madrid.
2024
AL Congress in Brussels
The first congress dedicated to AL amyloidosis is held in Belgium.
2025
AMYLife Survey
AMYLife, the Alliance’s international survey exploring the experiences and daily lives of people affected by amyloidosis, is launched.
2026
Fifth Amyloidosis ATTR meeting for patients and doctors
The international ATTR meeting is hosted in Baveno, Italy.
2027
Sixth International AL & ATTR Meeting for Patients and Doctors
Planned: the AL and ATTR meetings will come together in a single international event for patients, healthcare professionals and the wider amyloidosis community.
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