2 children hugging a elderly man

For patients and carers

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

Find support

People helping each other in a support group

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.

Contact us

If you have any questions or just need someone to talk to, please feel free to email us. It may take us a few days but we have clinical experts on hand to help and our trustees have a wealth of experience to draw upon. We’re here to help. 

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.

Exercises

Personal Trainer and Strength Coach Alan Levi outlines and demonstrates a range of upper & lower body workouts to help people with amyloidosis manage living with their condition. These are of course also great for anyone to do!

Upper body workouts for amyloidosis patients with Alan Levi

Lower body workouts for amyloidosis patients with Alan Levi

Strength training

There are numerous manifestations of amyloidosis that impact physical function and strength training can help with many of these. The physical benefits of strength training lead to a better quality of life.

Benefits of strength training for amyloidosis patients

Group of people in gym doing various kinds of strength training.

Staying safe while strength training

Two people stretching their legs while holding their toes.

Developing a strength training program

Corrective exercises

Practical tips & techniques

Frequently asked questions

Coming to terms with amyloidosis

  • How do people come to terms with a loved one being diagnosed with amyloidosis?
  • What kinds of adjustments do families face after an amyloidosis diagnosis?
Read all questions & answers

Inheriting amyloidosis

  • How does hereditary amyloidosis work within a family?
  • How do families get genetic testing for ATTR amyloidosis?
  • How do I talk to family members who may have also inherited amyloidosis?
Read all questions & answers

Caring

  • How is care provided at the National Amyloidosis Centre (NAC)?
  • How are all the different healthcare professionals involved in caring for an amyloidosis patient coordinated and how does long term monitoring work?
Read all questions & answers

Finding support

  • Are there any support groups for amyloidoisis?
  • How do I get 1 to 1 support as a carer of someone with amyloidosis?
Read all questions & answers

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

View all FAQ Videos

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

Life on hold

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.

View all stories from the community
Do you have a story to tell?
Share your STory with us

More resources

Find a range of useful information and external resources for all types of amyloidosis to help guide you through your diagnosis and support you in living with amyloidosis.
Visit Our Resources page

Forum

Join the forum, be part of the amyloidosis community
Join Here

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.
Find out more

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