Skip to content
Search

Latest Stories

Sajid Javid launches England’s rare diseases action plan

Sajid Javid launches England’s rare diseases action plan

HEALTH secretary Sajid Javid on Monday (28) launched England’s first rare diseases action plan which aims to speed up diagnoses and care.

The initiative will allow the healthcare workforce to support patients better by leveraging the UK’s technology, Javid said.

There are more than 7,000 rare diseases, affecting an estimated 3.5 million people in Britain.

Their complex nature means it is difficult for healthcare professionals to receive training on every condition or for patients to access relevant specialists.

Muscular Dystrophy Child (Rare Disease) Muscular Dystrophy Child (Rare Disease)


People living with rare diseases, such as muscular dystrophies or Huntington’s disease, can go through multiple appointments and referrals before a diagnosis is made due to the complexity of conditions, making it difficult for individuals and their families to coordinate their care.

The action plan, which comprises 16 commitments to improve care, has been developed in partnership with NHS England and NHS Improvement and the National Institute for Health and Care Excellence.

It includes commitments on research, with an announcement of £40 million in new funding to the National Institute for Health Research (NIHR) BioResource, to further its work in understanding rare diseases.

I am committed to levelling up our health system so that everyone regardless of their condition can receive treatment that is tailored to their needs,” Javid said.

The action plan will include improvements to newborn screening, supporting access to new treatments and pilot approaches to care for patients with undiagnosed rare conditions.

It will also include a new digital tool called ‘GeNotes’, which will allow healthcare professionals to quickly access information on rare diseases.

While the new initiative launched on Rare Disease Day is applies to England, the devolved administrations will publish their own action plans by the end of 2022.

The UK Rare Diseases Framework announced last year had set out priorities for all four nations to speed up diagnosis, raise awareness and improve treatment and care.

More For You

Former police officer arrested in Rotherham investigation

Investigators believe the earlier offences happened between 1995 and 2002 (Photo for representation: iStock)

Former police officer arrested in Rotherham investigation

A FORMER police officer has been arrested in connection with the ongoing investigation into child sexual abuse in Rotherham, authorities revealed on Tuesday (1).

The former constable, who is in his 50s, was taken into custody on Monday (31). He is suspected of raping a teenage girl in the South Yorkshire town in 2004, according to officials.

Keep ReadingShow less
Modi Xi

Narendra Modi and Xi Jinping during their meeting in October 2024.

75 years of India-China relations: Modi, Xi call for stronger ties

INDIAN prime minister Narendra Modi and Chinese president Xi Jinping exchanged messages on Tuesday to mark the 75th anniversary of India-China diplomatic relations.

Modi stated that the development of bilateral ties contributes to global stability and a multipolar world, while Xi called for a "dragon-elephant tango" to strengthen cooperation between the two countries, China's state-run Xinhua news agency reported.

Keep ReadingShow less
Sri Lanka forms committee to address UK sanctions
Anura Kumara Dissanayake

Sri Lanka forms committee to address UK sanctions

THE Sri Lanka government on Wednesday (2) formed a committee to recommend measures regarding the UK's decision to impose sanctions on three former military commanders who led the campaign that crushed the Liberation Tigers of Tamil Eelam (LTTE) in 2009.

Health minister Nalinda Jayatissa told reporters that foreign minister Vijitha Herath, justice minister Harshana Nanayakkara and deputy minister of defence Aruna Jayasekara would comprise the committee that would consult experts for the purpose.

Keep ReadingShow less
Gujarat-blast-ANI

The blast caused the factory’s concrete roof to collapse, scattering debris and body parts across the area, officials confirmed. (Photo: ANI)

ANI

Death toll rises to 21 in Gujarat firework factory explosion

AN EXPLOSION at an illegal firecracker factory in Gujarat's Deesa town killed 21 people and injured several others on Tuesday, officials said.

The blast caused the factory’s concrete roof to collapse, scattering debris and body parts across the area, officials confirmed.

Keep ReadingShow less
Child benefit payments set to rise for UK families

Child benefit, normally paid every four weeks directly into bank accounts, has undergone significant changes in recent months (Photo: Getty Images)

Child benefit payments set to rise for UK families

MILLIONS of British families are set to receive a financial boost as child benefit payments increase from April 7, according to HM Revenue and Customs (HMRC).

From next week, parents will receive £26.05 per week for the eldest or only child, amounting to £1,354.60 annually - up from the current rate of £25.60. For each additional child, payments will rise to £17.25 weekly, totalling £897 per year - an increase from the present £16.95 rate. This represents a 1.7 per cent increase across all payment categories.

Keep ReadingShow less