Humane Resources: Funding Restrictions in Rare Rheumatic Diseases
As any rheumatologist knows, most non-medical individuals don’t really know what ‘rheumatology’ is. Not so much of a bad reputation, as no reputation. Relatives and […]
UK
Living with a rare disease: a husband and father’s perspective
What does rare disease mean to you? To me, rare disease means a mutation called R1016X in a gene called NLRP12 on my son’s and […]
We must act as England falls behind on access to rare disease medicines
It is crucial that we develop a bespoke process to evaluate ‘orphan’ medicines if we are to eradicate inequality in the system, says Sebastian Stachowiak […]
Three new medicines cleared for use by NHS Scotland
The Scottish Medicines Consortium has endorsed three medicines for routine use by NHS Scotland, offering new options to treat a rare eye disease, lupus and […]
NLRP12.com’s 2017 Scottish Council Manifesto released
For the 2017 Scottish Local Council Elections NLRP12.com have released their manifesto for council candidates throughout Scotland. We had hoped to be able to get […]
Pharma warns new NICE rules will delay access to meds
Pharma companies are warning that changes to the way the National Institute for Health & Care Excellence (NICE) and NHS England (NHSE) assess new medicines, […]
Ultra-rare disease drugs: has access in England just got harder?
Story from Andrew McConaghie on PharmaPhorum New rules on market access introduced by NICE from 1 April will affect most new medicines – but gaining […]