Networked models of care have the potential to provide better access to specialist care for rare diseases in the NHS. The government committed to establishing an innovative networked model of care for amyloidosis in the England Rare Diseases Action Plan 2024.1 Successful roll-out could address inequities in care for amyloidosis patients and provide a blueprint for other rare diseases.
This publication has been sponsored and paid for by AstraZeneca, and the authors contracted for their time spent on the article. The insights and perspectives shared reflect the authors’ genuine viewpoints and expertise, with content development supported by AstraZeneca. This article is intended for UK healthcare professionals, policymakers, and professional patient advocacy organisations.
The need for a networked model in amyloidosis care and progress to date
Amyloidosis is characterised as a group of multisystemic rare conditions caused by the build-up of misfolded protein in the body,2 and there are different types. Light chain amyloidosis (AL amyloidosis) is often associated with myeloma, while transthyretin amyloidosis (ATTR amyloidosis) is caused by abnormal TTR proteins and can lead to cardiomyopathy (ATTR-CM) and polyneuropathy (ATTR-PN) depending on the location of protein build-up in the body.3,4
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Amyloidosis is challenging to diagnose and, if left untreated, can lead to severe complications and be fatal.5,6 As more treatments become available and awareness of amyloidosis increases, demand for services is rising.7
Due to the specialist nature of amyloidosis, all patients with suspected amyloidosis have historically been referred to a single National Amyloidosis Centre (NAC), based in the Royal Free Hospital in London. While the NAC is considered the leading expert centre in the UK, its single location presents a geographic barrier to care. Some patients have to travel long distances – or choose not to travel at all – to receive treatment or a diagnosis.6 This may affect quality of life and, for some, leads to delays in accessing care.
To improve access to care, the government committed to a networked model of care with four initial regional sites across the UK, connected to the NAC as a central expert hub supporting diagnosis and treatment. This approach mirrors the hub and spoke model for the management of inherited cardiac conditions, which have already been implemented successfully in some regions.8
However, the rollout of the amyloidosis network has experienced delays. To date, only one regional site has been established, and the timeline to incorporate additional sites is unclear.
As NHS governance undergoes major changes, there is a need to ensure that the rollout continues to be prioritised and that it delivers the improvements in care that patients need.
How can we strengthen the roll-out of the networked model of care?
Amyloidosis UK and Cardiomyopathy UK recently attended a roundtable hosted by AstraZeneca, bringing together patient organisations, leading healthcare professionals, and patient advocates to discuss progress and opportunities for strengthening the network moving forward.
Attendees provided several recommendations centred on adequate resourcing; joined-up and holistic multidisciplinary care supporting quality of life improvement; and enhancing existing communication – across experts, potential network sites, the amyloidosis community, and the centre – to build on existing progress.
Any future regional site will be operating in a resource-constrained environment. To deliver holistic care at a standard comparable to the NAC, they will need sufficient support to staff appropriately (including specialist nurses), build on local diagnostic capabilities, and establish regional multidisciplinary teams to share knowledge and upskill non-specialist clinical staff.
In addition, while amyloidosis services are commissioned nationally, other important services – such as those for heart failure – are commissioned locally. These fragmented commissioning responsibilities can create uncertainty over who should lead provision.
Secondly, limited awareness of amyloidosis and the appropriate referral routes among non-specialist clinicians highlights the need for improved patient and clinical education.9 National clinical guidelines or quality standards for amyloidosis could enable the standardisation of diagnosis, management, and care across the network.
Meanwhile, robust care planning, signposting, and coordination would improve the experience of patients navigating often complex care pathways without adequate support.
Finally, the success of the network relies on the involvement and commitment of the amyloidosis community as a whole. A strong and regular dialogue across all those involved in amyloidosis care – patient organisations, healthcare professionals, expert sites, and NHS England – would support an optimal environment for success.
Networked models of care have the potential to transform the delivery of services for rare diseases. However, this potential can only begin to be realised if we collectively take action to ensure that the network achieves equity of access to high-quality, holistic care and improves outcomes for amyloidosis patients nationwide.
Veeva ID: GB-73675
Date of preparation: February 2026
References:
1. Department of Health and Social Care. England Rare Diseases Action Plan 2024. Available here: https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2024 [Last accessed February 2026]
2. NHS. Health A to Z: Amyloidosis. Available here: https://www.nhs.uk/conditions/amyloidosis. [Last accessed February 2026]
3. Mayo Clinic. 2025. Amyloidosis. Available here: https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178 [Last accessed February 2026]
4. Mackenzie’s Mission. 2024. ATTR-CM (cardiomyopathy) vs ATTR-PN (peripheral neuropathy). Available here: https://mm713.org/attr-cm-cardiomyopathy-vs-attr-pn-peripheral-neuropathy/ [Last accessed February 2026]
5. Cleveland Clinic. AL Amyloidosis (Primary Amyloidosis). Available here: https://my.clevelandclinic.org/health/diseases/15718-amyloidosis-al-amyloid-light-chain [Last accessed February 2026]
6. Witteles R.M. et al. 2019. Screening for Transthyretin Amyloid Cardiomyopathy in Everyday Practice. Journal of the American College of Cardiology. Available here: https://www.sciencedirect.com/science/article/pii/S2213177919302720?via%3Dihub [Last accessed February 2026]
7. Choy, C.H. et al. 2024. Extending the reach of expert amyloidosis care: A feasibility study exploring the staged implementation of a UK amyloidosis network. Clinical Medicine. Available here: https://www.sciencedirect.com/science/article/pii/S1470211823000040?via%3Dihub [Last accessed February 2026]
8. Alway, T. et al. 2024. The development of inherited cardiac conditions services: current position and future perspectives, British Medical Bulletin, Available here: https://doi.org/10.1093/bmb/ldae003 [Last accessed February 2026]
9. Brito D, et al. 2023. World Heart Federation Consensus on Transthyretin Amyloidosis Cardiomyopathy (ATTR-CM). Glob Heart. [Last accessed February 2026]
