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<p>Several of the actions in the 2022 and 2023 England Rare Diseases Action Plans
focus on genomic approaches to provide faster diagnosis for people with undiagnosed
rare conditions, including genetic conditions. However, for some people living with
extremely rare diseases, the complex and rare nature of their conditions may mean
that they never receive a diagnosis. We are committed to ensuring that these people
and their families also receive the support and care they need.</p><p>In the England
Rare Diseases Action Plan 2022 NHS England committed to ‘pilot new approaches for
patients with undiagnosed conditions’ (action 5). To address this commitment, during
2022, NHS England developed a proposal for a syndrome without a name (SWAN) Pilot
Programme for people whose conditions remain undiagnosed. It will progress through
the NHS England finance and governance processes and there will be a clearer plan
for delivery in the next few months. If the SWAN Pilot Programme expands such that
there is a need for a service specification, the normal processes would be followed
in terms of engaging with stakeholders, including consulting with patients and the
public on the delivery of the Programme.</p>
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