Tuesday, December 14, 2021

DHSC publishes ‘UK Rare Disease Framework’




The UK’s Department of Health and Social Care (DHSC) has published its ‘UK Rare Disease Framework’, which will aim to continuously improve the lives of people living with rare diseases.

Despite rare diseases being individually uncommon, it is currently estimated that there are over 7,000 rare disease, with new conditions being identified as research advances.

Currently, 1 in 17 people will be affected by a rare disease at some point during their lifetime.

The framework identifies four key priorities for rare diseases care and diagnosis to be addressed over the next five years, which includes:

  1. Helping patients get a final diagnosis faster
  2. Increase awareness of rare disease among healthcare professionals
  3. Supporting better coordination of care
  4. Improving access to specialist care, treatment and drugs.

The framework will seek to work with the four nations of the UK to improve patient care for people living with rare diseases, building on the prior commitments made in the UK Strategy for Rare Diseases.

The four key priorities are also supported by further ‘underpinning themes’, which are identified as: patient voice; national and international collaboration; pioneering research; digital, data and technology; and wider policy alignment.

“We welcome the publication of the UK Rare Diseases Framework and look forward to working with the four nations of the UK to help to deliver its aims,” said Nick Meade, Genetic Alliance UK – part of Rare Disease UK.

“This is once again an almost unique piece of health policy in that it represents a commitment from four health ministers from across the UK to deliver a shared aim for people living with rare conditions,” he added.

Following the publication of the new framework, the four nations of the UK will now develop action plans to identify how they will address the four key priorities laid out above.

These action plans will be published, where possible, in 2021, according to the UK Rare Disease Framework document.



Source link

Latest Articles

Widely used chemical linked to 1,00,000 US deaths per year: Study

NEW YORK: Daily exposure to phthalates, a group of chemicals used in everything from plastic containers to makeup, may lead to approximately 100,000 deaths...

Foods to Reduce Inflammation and Strengthen the Immune System

Did you know that you can greatly reduce inflammation and boost your immune system by simply incorporating more anti-inflammatory foods and beverages into your...

Personal Selling

INTRODUCTION Early sellers and traders were not held in high esteem. The Roman word for salesman meant ‘Cheater’ and...

Building Muscle on a Vegan Diet

There are a lot of  misconceptions surrounding veganism. The notion that those who practice it are lacking in protein and therefore muscles is the...

Electrodes in brain new hope for severe cases of epilepsy

Neurosurgeons at All India Institute of Medical Sciences have devised a new technique for operating on children suffering from a severe form of epilepsy...