AMYLOIDOSIS ALLIANCE The Voice of Patients

Unified Global Action

Architecting a Future Without Amyloidosis.

A global strategic monolith, uniting patients representatives, medical experts, and research institutions across continents to accelerate diagnosis and therapeutic breakthroughs.

Our Vision
Read Strategy

24

member
associations

worldwide

24

Member Associations

19

Countries

8

Languages

1

Global Mission

Our Strategic Roadmap

Our Missions

A strategic roadmap for global healthcare transformation and patient empowerment.

Uniting Patient Organizations Worldwide

A global network connecting patient organizations across countries to advance awareness, advocacy, education, research, and patient support.

Amplify the patient voice worldwide

Represent the needs and priorities of people living with amyloidosis before policymakers, healthcare authorities, researchers, and industry stakeholders.

Reduce diagnostic delays

Raise awareness among healthcare professionals and the public to promote earlier diagnosis and improve patient outcomes.

Improve access to care and treatment

Working together to promote equitable access to timely diagnosis, specialized care, and treatments for everyone affected by amyloidosis worldwide.

Advance research and innovation

Support scientific initiatives, foster patient participation in research, and help accelerate the development of new therapies.

Strengthen patient organizations

Empower existing patient groups and support the creation of new organizations in underserved regions of the world.

Generate real-world evidence

Produce and leverage international patient data to better understand the impact of amyloidosis and inform healthcare policies, research priorities, and care pathways.

Mobilize global stakeholders

Bring together patients, caregivers, healthcare professionals, researchers, and partners around a shared mission: improving the lives of everyone affected by amyloidosis.

About the Alliance

Discover the Amyloidosis Alliance

Discover the people, partnerships, and shared mission behind the Amyloidosis Alliance, and how together we are building a stronger future for patients worldwide.

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Across Borders

International Dimension

Currently operating across 19 countries, the Alliance creates a redundant network of expertise. Each member nation contributes local insights to a global knowledge base, ensuring no patient is left behind regardless of geography.

  • Australia
  • Austria
  • Belgium
  • Brazil
  • Canada
  • Colombia
  • France
  • Germany
  • Ireland
  • Israel
  • Italy
  • Mexico
  • Netherlands
  • New Zealand
  • South Korea
  • Spain
  • Sweden
  • United Kingdom
  • United States
Illustrated globe

Our member
associations are
spread across

19

countries

“Unity is our strongest diagnostic tool. By crossing borders, we eliminate the isolation of rare disease.”

The Amyloidosis Alliance

Clinical Foundation

Understanding Amyloidosis

Pathology · Critical Data · Visualization

The Pathology

Protein Misfolding

Amyloidosis is a rare disease that occurs when an abnormal protein, called amyloid, builds up in organs and interferes with their normal function. Over thirty distinct subtypes exist, each requiring its own diagnostic pathway.

Deep Dive Technical Docs

Critical Stat

4+

Years is the average time to diagnosis. Our mission is to reduce this to months through global standard protocols.

Scientific Visualization

Amyloid fibril structure

A world map drawn by a crowd of people seen from above

26

October
Awareness Day

World Awareness Campaign

World Amyloidosis Day

Every year on October 26, World Amyloidosis Day brings together patients, caregivers, healthcare professionals, researchers, institutions, and patient organizations to raise awareness of this rare and complex disease.

The campaign highlights the need for faster diagnosis, better access to care, and a stronger international network. As the dedicated campaign site is integrated into the new Amyloidosis Alliance platform, this section becomes the gateway to actions, resources, testimonies, and global campaign materials.

Discover

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