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 network of patient organizations working across countries to strengthen the patient voice and improve awareness, diagnosis, care, research and advocacy in amyloidosis. Founded in 2018, it brings together 24 patient organizations across 19 countries and supports international collaboration while respecting the diversity of its members.
Is the Alliance a patient association itself?
No. The Alliance is an umbrella organisation whose members are patient organizations. It does not replace them. Its role is to connect them, share knowledge and resources, and strengthen the patient voice internationally while respecting the different realities and perspectives of its members. For local support, information in your language or a patient community near you, the best contact is the member organization 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 consultation with a healthcare professional. We provide general information about amyloidosis and can direct you to a patient organization in your country and, where appropriate, to information about specialist care. Questions about your individual situation should be discussed with your healthcare team.
I live with amyloidosis, or care for someone who does. How can the Alliance help me?
We provide general information about amyloidosis in several languages, help you find a member organization in your country for local support and peer exchange, and create opportunities for patient and caregiver experience to contribute to awareness, research and advocacy through initiatives such as World Amyloidosis Day and surveys.
How can our patient organisation join the Alliance?
Patient organizations active in amyloidosis are welcome to apply for membership. Applications are reviewed to ensure that the organization’s mission and values are compatible with those of the Alliance. Please complete the membership form and a member of the Alliance team will contact you to discuss the next steps.
What happens once our membership is accepted?
Once accepted, your organization becomes part of the Alliance network and can take part in member meetings, campaigns and collaborative projects according to its interests and availability. Members share experience and resources, contribute to specific initiatives such as World Amyloidosis Day or translations, and are represented on the Alliance website.
Who runs the Alliance?
The Alliance is governed by a Board elected from its member organizations. A permanent team coordinates day-to-day activities and implements the annual work plan. Members contribute voluntarily to specific projects and topics according to their interests and expertise, while the Scientific Committee provides scientific and medical expertise to support the Alliance’s work.
What is World Amyloidosis Day?
World Amyloidosis Day takes place every year on 26 October. Launched in 2021, it brings together patients, caregivers, patient organizations, healthcare professionals and other stakeholders around the world to raise awareness of amyloidosis and the challenges faced by people affected by the disease. Activities vary from country to country and may include meetings, conferences, public events and media campaigns.
I am not a patient association. How can I support the Alliance?
Healthcare professionals, researchers, institutions and companies can support or collaborate with the Alliance in different ways, including awareness activities, events, research-related initiatives and partnerships. The Alliance’s members are patient organizations; other stakeholders can contact the team to discuss appropriate forms of collaboration or support.
What if there is no Alliance member organization in my country?
If there is no Alliance member organization in your country, you can still contact us. We may be able to direct you to relevant information, another patient organization or an appropriate resource. However, the Alliance cannot guarantee the availability of local support or specialist services in every country.
How can patients and caregivers contribute to the Alliance’s work?
Patients and caregivers can contribute in several ways, including sharing their experience through surveys and consultations, taking part in awareness initiatives, contributing to events or specific projects, and engaging with their national patient organization. Opportunities vary depending on the project and country.
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