WGPlus (Archive)

If you are one of them, it is a literally ‘lifesaver’
NHS England has recently confirmed that 3 new specialised treatments will be made available for patients in England.  It is estimated that up to 145 people a year will meet the clinical criteria to benefit from the treatment options being made routinely available to their clinicians with funding from NHS England:
Researched Links:

NHS England:  Patients with rare conditions to benefit from new treatments

That’s 5% of the Welsh population are rare exceptions

First hormone replacement therapy for parathyroid disorder

NICE says patients accessing more cancer drugs following price drops

NICE approves kidney cancer drug for NHS use

Screening for risk of kernicterus not beneficial

Talking Hands helps Abigail express herself

NICE recommends elosulfase alfa (Vimizim) for treatment of very rare life-limiting genetic disorder under managed access agreement

NHS England negotiates price cuts for ultra-rare Morquio A syndrome drugs

Families of children with rare diseases welcome Lottery funding

New advanced drugs available on Welsh NHS with £14m investment

NHS Commissioning:  Rare Diseases Advisory Group (RDAG)

UK Strategy for Rare Diseases - NHS England

NHS England and NICE respond to rare disease patients

Rare diseases - GOV.UK

White Paper - Continuity and confidence: how to accelerate the delivery of digital citizen services