A global alliance for people affected by amyloidosis

Working for a future without amyloidosis.

A global alliance of patient organizations working with healthcare professionals, researchers and partners to improve diagnosis, care, research and the lives of people affected by amyloidosis.

Our missions

Our members

24

member
organizations

worldwide

1

Global Mission

8

Languages

19

Countries

24

Member Organizations

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.

Across Borders

An international network

With member organizations in 19 countries, the Alliance brings together local experience and expertise within a global network. Each member organization brings local knowledge and experience, helping the Alliance address shared challenges across countries and healthcare systems.

Our member
organizations are
spread across

19

countries

“By connecting patient organizations across borders, we can share experience, strengthen advocacy and reduce isolation.”
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.

Learn more about amyloidosis

Diagnostic delay

4+

years

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

Scientific Visualization

Amyloid fibril structure

30+

types of amyloidosis

More than 30 different types of amyloidosis have been identified, each associated with a specific amyloid-forming protein.

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.

Explore

Latest Updates