Resources image of medical books next to a stethoscope

Resources

Here you’ll find a range of useful information and resources to help guide you through your diagnosis and help support you with the management of your condition. We’re always adding to this section to try and improve the available content for our members. If you feel that something would be helpful to add, please get in touch.

For All Types of Amyloidosis...

  • Global Heart Hub: Clinical Trial Search Portal

    Adapted to local languages and tailored to feature cardiovascular disease trials available in individual countries to enable patients to explore cardiovascular clinical trials which may be relevant to them.

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  • Global Heart Hub: Clinical Research Patient Information

    Easy to understand trustworthy information to help patients to understand what clinical research is and why it matters.

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  • Video: what to expect when you visit the National Amyloidosis Centre

    An 8 minute video walking patients through an actual visit to the National Amyloidosis Centre in London. Lead Clinical and Research Nurse Angelique Smit explains who the NAC are and what to expect when you go there for an appointment.

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  • Symptom tracker app (STAR)

    Free app to help track and record changes in amyloidosis symptoms.

    We love: You can create and download reports of your symptoms to share with your doctor or nurse.

    For: patients

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  • Cardiomyopathy UK

    A UK charity offering support to anyone affected by cardiomyopathy. The general cardiomyopathy information on their website is applicable to amyloidosis, there is also a dedicated page for amyloidosis patients.

    We love: They operate a nurse helpline which is open Monday to Friday from 8:30 am – 4:30 pm.

    For: cardiac, patients, carers, health care professionals

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  • Amyloidosis Research Consortium (ARC)

    USA-based organisation whose British founder is an AL amyloidosis patient. Some information is USA-specific however, their website offers a wealth of reliable information and resources.

    We love: Their resources page!

    For: patients, carers, health care professionals

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  • Amyloidosis Alliance

    International advocacy umbrella group founded and run by amyloidosis patients. The website has good information and resources.

    We love: Information available in different languages.

    For: patients, carers

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  • One Amyloidosis Voice

    USA-based professional organisation offering a collection of up to date, high quality amyloidosis resources from around the world.

    We love: They do great plain language summaries of medical publications, and have a forum for private chats with other patients / carers.

    For: patients, carers, health care professionals

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  • NHS Amyloidosis Information

    NHS Web page giving a general overview of amyloidosis, causes, different types and symptoms.

    We love: Easy to understand.

    For: patients, carers, health care professionals

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For ATTR Amyloidosis...

  • PODCAST: ATTR amyloidosis in patients with Carpal Tunnel Syndrome

    Nicolas Bigorre from the Centre de la Main in France and our own trustee Carlos Heras-Palou from the Pulvertaft Centre in the UK dive into the topic of ATTR Amyloidosis and its link to Carpal Tunnel Syndrome.

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  • Living with Transthyretin Amyloid Cardiomyopathy (ATTR-CM): a toolkit for patients

    The World Heart Federation has developed a new toolkit designed for patients with ATTR-CM that builds on the main gaps in achieving optimal care for patients including disease impact; genetic implications; treatment options; and a new symptom monitor and tracker.

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  • The hATTR Bridge

    Website providing a wealth of information, tools and resources.

    We love: The ‘Speaking to Your Doctor’ page and Video Library.

    For: patients, carers

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  • World Heart Federation videos

    Videos from a patient and doctor and nurse experts on recent improvements in the cardiac amyloidosis landscape and remaining unmet needs.

    We love: Engaging rapportage-style videos covering important topics.

    For: patients, carers, health care professionals

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For AL Amyloidosis...

  • Myeloma and AL Amyloidosis European Clinical Trial Navigator

    For those among our community living with AL amyloidosis, you can use this helpful tool to find clinical trials across Europe including the UK.

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  • Myloma UK Website

    Myeloma UK provide information about AL amyloidosis, it’s diagnosis, symptoms, treatment.

    We love: Prof Wechalekar’s video.

    For: patients, carers, health care professionals

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For AA Amyloidosis...

  • AA Amyloidosis Patient Information Leaflet

    Printable information leaflet for AA amyloidosis patients providing an overview of the disease and it’s treatment.

    We love: It’s comprehensive.

    For: patients, carers

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