The Alliance
Our missions & our actions
Everything the Amyloidosis Alliance does flows from a clear mandate: inform, advocate, connect and act internationally to help improve diagnosis, care and outcomes for people affected by amyloidosis.
Strategic foundation
Our 8 missions
Eight priorities that guide the Alliance’s initiatives, partnerships and campaigns for people affected by amyloidosis and the organizations that support them.
01 · Patient advocacy
Amplify the patient voice worldwide
Bring the needs and priorities of people affected by amyloidosis into discussions with policymakers, healthcare authorities, researchers and industry stakeholders.
02 · Awareness
Reduce diagnostic delays
Raise awareness among healthcare professionals and the public to promote earlier diagnosis and improve patient outcomes.
03 · Access
Improve access to care and treatment
Advocate for equitable access to high-quality care, expertise, and therapies regardless of where patients live.
04 · Research
Advance research and innovation
Support scientific initiatives, foster patient participation in research, and help accelerate the development of new therapies.
05 · Network
Connect the global amyloidosis community
Build a strong international network that enables collaboration, knowledge sharing, and mutual support among patient organizations.
06 · Empowerment
Strengthen patient organizations
Empower existing patient groups and support the creation of new organizations in underserved regions of the world.
07 · Evidence
Generate real-world evidence
Generate and use international patient-reported evidence to better understand the experience of amyloidosis and inform healthcare policies and care pathways.
08 · Mobilization
Mobilize global stakeholders
Bring together patients, caregivers, professionals, researchers, and partners around a shared mission: improving the lives of everyone affected by amyloidosis.
02
From mission to action
Our missions are translated into action through a simple cycle: listening to needs, defining priorities, bringing expertise together, sharing resources and assessing results.
01
Listen
Share member experiences during monthly meetings between Alliance members.
02
Define priorities
Converting lived experience into clear, evidence-based priorities for action.
03
Mobilise experts
Bringing together the relevant patient, clinical, research and policy expertise around shared goals.
04
Share resources
Publishing toolkits, guidelines, and campaigns available to all members.
05
Measure impact
Tracking outcomes against clear indicators and reporting back to the network.
03
Action streams
Four structured workstreams through which the Alliance delivers on its mission, each with its own objectives, metrics, and dedicated working group drawn from member associations.
Patient information
Facilitating the exchange and dissemination of trusted resources across the global amyloidosis community, including multilingual materials developed by patient organizations and partners.
Professional education
Facilitating access to educational resources, expert insights, and shared knowledge to support healthcare professionals in improving their understanding of amyloidosis.
Research collaboration
Supporting connections between patient organizations, scientific communities, and research partners to facilitate knowledge exchange and encourage progress in amyloidosis research.
International advocacy
Bringing together patient organizations worldwide to strengthen the patient voice, promote awareness of amyloidosis, and support meaningful dialogue with healthcare and policy stakeholders.
04
Campaigns & events
Key campaigns and events that raise awareness, share knowledge and bring the amyloidosis community together.
World Amyloidosis day
Every 26 October, the Alliance mobilises member organizations, healthcare professionals and the public through a coordinated international campaign to raise awareness, encourage earlier recognition and strengthen solidarity.
Congress & knowledge events
Our international meetings and educational events bring together patients, healthcare professionals, researchers and advocates to share knowledge and experience.
AMYLife Survey
A worldwide survey gathering the experience of people living with amyloidosis, their families, and their caregivers, to document the daily reality of the disease and inform care, research, and policy.
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Priority audiences
Our work addresses the needs of different audiences and stakeholders, with activities adapted to their respective roles and expectations.
Member associations
Connecting organizations worldwide to collaborate, share knowledge, and strengthen the patient voice.
Patients & families
Access to trusted resources, patient communities, and shared experiences from around the world.
Healthcare professionals
Supporting awareness, education, and knowledge sharing about amyloidosis.
Researchers
Encouraging collaboration and patient involvement cross-border in amyloidosis research.
Policy makers
Amplifying the patient voice to promote awareness, recognition, and better healthcare policies for amyloidosis.
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Flagship projects
Key initiatives that put the Alliance’s missions into practice.
World Amyloidosis day
An international awareness campaign held every 26 October, bringing together the amyloidosis community around the world.
International AL & ATTR meeting
From 2027, the AL and ATTR congresses merge into a single international congress bringing the whole community together.
AMYLife Survey
A worldwide survey documenting the daily reality of living with amyloidosis, to inform care, research, and policy.
Educational resources toolkit
A multilingual library of patient information, educational resources and practical tools made available through the Alliance and its partners.