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For patients and carers

Helping to guide you through your diagnosis and support you and your carer(s) with managing your condition

Resources

Find a range of useful information and resources to help guide you through your diagnosis and support you in living with amyloidosis.
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Find support

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Support groups

There are support groups for many types of amyloidosis and associated conditions across the UK & Ireland. This page aims to collect them all in one place and help you find the one that suits you best.

Mental health support

It is normal to feel emotional, social and physical side effects after a diagnosis and during treatment. Patients and families are encouraged to seek support and share their feelings with whomever they feel most comfortable with.

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Stories from the community

Saint & Alexander's Story

Saint’s V122I amyloidosis journey

In their video, Saint, who was diagnosed with the V122I form of amyloidosis in 2018 discusses his journey with the condition with his son, Alexander. Together, they talk about the information received from healthcare professionals and the importance of having supportive friends and family.

David & Libby's Story

Dealing with grief

In these videos, Libby, who used to care for her nan who had ATTR amyloidosis, talks to her great-uncle, David, who also has the condition. Together, they discuss the grief of losing a family member with ATTR, the impact a diagnosis has on the wider family, where you can turn to for help as a caregiver of someone with ATTR and how it can feel to care for someone with the condition.

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Common questions answered

Expert advice from Jo Ablett

Talking to friends and family

Dr Joanne Ablett is a clinical psychologist with experience in chronic conditions. Her videos below focus on mindfulness and mental health, as well as how to tackle some of the tougher to answer questions a diagnosis of hATTR may raise.

Expert advice from Carol Whelan

Questions to ask your care team

Dr Carol Whelan holds the position of Consultant at the National Amyloidosis Centre. Having worked with the hATTR community for years, her videos below explain a bit more about the symptoms, care, and the potential hereditary nature of this condition

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Forum

Join the forum, be part of the amyloidosis community
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Paid & volunteering opportunities

We’re looking for advocates to help shine a light on the real-life challenges of living with different types and variants of amyloidosis and help shape future support, care and awareness efforts. Often working with industry partners, we have a mixture of paid and volunteering opportunities.
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