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.
associations
worldwide
25+
Member Associations
19
Countries
8
Languages
1
Global Mission
Our Strategic Roadmap
Our Missions
A strategic roadmap for global healthcare transformation and patient empowerment.
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
Advocate for equitable access to high-quality care, expertise, and therapies regardless of where patients live.
Advance research and innovation
Support scientific initiatives, foster patient participation in research, and help accelerate the development of new therapies.
Connect the global amyloidosis community
Build a strong international network that enables collaboration, knowledge sharing, and mutual support among patient organizations.
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.
Patient Voices
Stories That Connect the Amyloidosis Community
Video testimonies help patients, families, caregivers, and healthcare professionals understand the reality of amyloidosis beyond clinical definitions. Through shared experiences, the Alliance raises awareness, breaks isolation, and encourages faster recognition of the disease worldwide.
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.
associations are
spread across
“Unity is our strongest diagnostic tool. By crossing borders, we eliminate the isolation of rare disease.”
The Amyloidosis Alliance
Clinical Foundation
Understanding Amyloidosis
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.
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
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.
Latest Updates
Latest News
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Global Congress 2024: Key Findings in Cardiac Amyloidosis
The latest gathering in Geneva brought together 500+ specialists to discuss non-invasive diagnostic tools and breakthroughs in cardiac amyloidosis care, with a renewed focus on early-detection biomarkers.
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Strategic Partnership with WHO for Orphan Disease Access
New initiative aims to streamline the procurement of rare disease treatments in developing member nations and reduce diagnostic delays globally.
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Annual Impact Report: 19 Countries, One Common Goal
Read our comprehensive review of global milestones achieved in the previous fiscal year and 2025 projections for the alliance’s expansion…