Patients and Families

Current work for 2014/ 2015

  • 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.