The Alliance
Our missions & our actions
Everything the Amyloidosis Alliance does flows from a clear mandate: inform, advocate, connect, and act at every level, across every border, to help improve diagnosis, care, and outcomes for people affected by amyloidosis.
Strategic foundation
Our 8 missions
Eight operational commitments that guide every initiative, partnership, and campaign the Alliance undertakes on behalf of patients worldwide.
01 · Patient advocacy
Amplify the patient voice worldwide
Represent the needs and priorities of people living with amyloidosis before 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
Produce and leverage international patient data to better understand 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
Strategic intentions only create impact when translated into coordinated action. This is the Alliance’s operational logic: a five-stage cycle that turns patient need into measurable, replicable outcomes across all member countries.
01
Listen
Gathering patient experience and clinical insight from all 19 member countries.
02
Adapt needs
Converting lived experience into clear, evidence-based priorities for action.
03
Mobilise experts
Bringing clinicians, researchers, and advocates together 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
Campaign lab
Flagship awareness campaigns that amplify the Alliance’s reach, from a dedicated global day to year-round scientific events.
World Amyloidosis day
Every 26 October, the Alliance mobilises members, healthcare professionals, and the public in a coordinated global campaign that drives diagnosis, solidarity, and media attention across all 19 countries.
Congress & knowledge events
From the annual Global Amyloidosis Symposium to regional workshops, our event programme brings together 1,500+ clinicians, researchers, and patient advocates each year for breakthrough scientific exchange.
AMYLIFE
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.
05
Priority audiences
Every mission stream is designed with a specific audience in mind. The Alliance ensures each group receives resources, representation, and access that meets their distinct needs.
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.
06
Flagship projects
Concrete initiatives where the Alliance’s mission becomes tangible, replicable, and measurable.
World Amyloidosis day
The largest international awareness event in the rare disease calendar, growing year on year across 19 countries.
International AL & ATTR congress
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 validated patient guides, clinical toolkits, and diagnostic aids freely accessible to all.
07
Impact dashboard
Measuring what matters: concrete indicators of the Alliance’s reach and effectiveness across all mission streams.
19
Countries reached
8
Languages covered
24
Campaigns activated