Rare conditions framework published


The UK Framework for Rare Conditions, published on 9th January, sets out a four-nations vision for the future of diagnosis, treatment and care for rare conditions.

The Framework, released just eight weeks after the Neurological Alliance's report on the current situation and future needs of those with rare neurological conditions, establishes a collaborative vision to build on the positives and address the barriers to ensure people with rare diseases have improved health outcomes.

It also seeks to address health inequalities, improve the quality and availability of care, and improve the lives of people living with rare diseases.

The Framework is part of a two-phase plan to improve outcomes for people with rare diseases, with the Framework setting out the strategic vision, and individual nation's expected to develop action plans which detail how they will achieve this vision.

The Framework sets out four key priorities:

  1. Ensuring patients get the right diagnosis faster

  2. Increasing awareness of rare conditions among healthcare professionals

  3. Better coordination of care

  4. Improving access to specialist care, treatments and drugs

For a more detailed summary, visit the Neurological Alliance's website, or read the Framework here.

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