Launching a report on accessing specialised services and therapies at the Senedd in early 2015 amongst key stakeholders
Supporting Welsh Patients Project- supporting the development of 4 patient groups in Wales where there is currently little support for patients and families affected by rare and genetic conditions. A number of conditions where there is unmet need have been identified, these include:Tuberous Sclerosis, Restless Legs Syndrome, Inherited Eye Disease and Ataxia
Access to medicines – working with the All Wales Therapeutics and Toxicology Committee (AWTTC) to support the establishment of a separate process for appraising orphan/ultra orphan medicines in Wales.
Welsh Rare Disease Plan – work to support the implementation of the Rare Disease Plan across NHS Wales and raise awareness of the plan
Working with the Wales Gene Park Education and Engagement team to support the organisation of training and education work around rare diseases
Engaging with patients and the public to raise awareness of rare diseases through public engagement initiatives
Working with colleagues at Genetic Alliance UK to secure external funding to develop a Welsh Patient Charter on Access to Medicines in Wales
Supporting the development of Genomic Medicine capabilities across NHS Wales specifically in relation to informed consent.