Resources
Frequently asked questions
Who we are, how the network is organised, and how patients, associations and healthcare professionals can take part. Questions about amyloidosis itself are answered in our dedicated disease section.
Questions & answers
About the Alliance
The questions our team receives most often, from patients and families as well as from associations and professionals around the world.
What is the Amyloidosis Alliance?
The Amyloidosis Alliance is an international coalition uniting patient associations, medical experts and research institutions around one shared mission: to end the diagnostic odyssey and transform care for people living with amyloidosis. Founded in 2018, it brings together 24 national patient organizations across 19 countries and turns scattered national efforts into one coordinated global force.
Is the Alliance a patient association itself?
No. The Alliance is an umbrella organisation: its members are the national patient associations, and it does not replace them. Its role is to connect them, pool knowledge and resources, and carry a single patient voice to health authorities, researchers and industry at international level. For local support, information in your language or a patient community near you, the right contact is the member association in your country.
Can the Alliance give me medical advice about my diagnosis?
No. We do not provide medical advice, second opinions or reviews of individual cases, and nothing published on this website replaces a consultation. What we do is publish trusted, validated information about the disease and point patients towards recognized centres of expertise and towards the patient association in their country. Any question about your own situation should be discussed with your treating physician.
I live with amyloidosis, or care for someone who does. How can the Alliance help me?
In three ways. We publish trusted resources about the different forms of the disease, currently available in 8 languages. We connect you with the member association in your country, which offers local support, peer communities and guidance towards specialised care. And we make sure your experience counts: through awareness campaigns such as World Amyloidosis Day, and through AMYLIFE, our worldwide survey documenting the daily reality of living with amyloidosis to inform care, research and policy.
How can our patient organisation join the Alliance?
Any association or patient organisation fighting amyloidosis is welcome to apply, wherever it is in the world. Organisations created less than a year ago can apply too and join as associate members while they establish themselves. Members share the five pillars of the Alliance: awareness and diagnosis, treatment, research, communication and advocacy. Fill in the membership form and a member of the board will get back to you shortly.
What happens once our membership is accepted?
Your organisation joins the network, takes part in the working groups and campaigns, and gets its own page on this website. To build that page we will ask you for five elements: a short presentation of your organisation in three to four lines, your website address, links to your social media accounts, a presentation brochure in PDF format if you have one, and your logo in good-quality PNG, preferably with a transparent background.
Who runs the Alliance?
The Alliance is led by a board elected from its member associations, which sets the strategic direction and is accountable to the global patient community. A permanent executive team coordinates day-to-day operations, four thematic working groups (awareness, resources, member relations, events) deliver the mission streams, and a scientific committee of leading clinicians and researchers guides medical priorities and validates our publications.
What is World Amyloidosis Day?
World Amyloidosis Day takes place every year on 26 October. Since its first edition in 2021, it has become the moment when patients, caregivers, healthcare professionals and patient organisations around the world unite behind one message to accelerate diagnosis and improve care. Each member association marks the day in its own country and in its own way: medical conferences, concerts, open lectures, press campaigns or patient meetings.
I am not a patient association. How can I support the Alliance?
Healthcare professionals, researchers, institutions and companies all have a place in the network. You can relay our awareness campaigns, take part in our events and educational programmes, contribute to research collaborations, or support the patient organisation active in your country. If you are looking for an institutional or industry partnership, write to the team directly and we will discuss how to work together.
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