Further support
NSPKU
The National Society for Phenylketonuria (NSPKU) is the only UK charity dedicated to improving the lives of people living with the rare condition PKU. Their goal is to support individuals and families living with (Phenylketonuria) PKU across the UK.
They do this through various activities
NHS England Commissioning
Following NICE's consideration of sapropterin for treating hyperphenylalaninaemia (HPA) in PKU patients and their awareness of potential generic availability at affordable prices, NHS England is now expanding access to sapropterin for all adult HPA patients with PKU, in alignment with NICE guidelines. This access extension also encompasses individuals with tetrahydrobiopterin (BH4) disorders. Given the generic sapropterin's equivalent effectiveness to the branded version, clinical teams will prioritize prescribing the most cost-effective option, even for patients currently undergoing treatment. This decision aims to ensure broader access to the medication while optimizing cost-efficiency.
BIMDG
The British Inherited Metabolic Disease Group’s (BIMDG) goal is to relieve persons suffering from inherited metabolic disease by advancing the education of persons involved in the diagnosis, care and treatment of such persons and to promote research into the treatment of inherited metabolic disease.
MEDICAL INFORMATION
Tel: +44 (0) 330 1359 454
Email: mi@logixxpharma.com
ADVERSE EVENTS
Reporting of side effects - If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the Package Leaflet. Side effects can be reported to LogixX Pharma Limited using the Contact Us Form or email mi@logixxpharma.com or also directly via the Yellow Card Scheme at: www.mhra.gov.uk/yellowcard.