We would like to invite you to a virtual meeting of the CPG on Rare, Genetic and Undiagnosed Conditions hosted by Mike Hedges MS on Wednesday 18 May, 12:00-13:30 via Zoom.

The Wales Rare Disease Action Plan will be launched at the meeting; setting out how the Department of Health and Social Care and delivery partners will implement the UK Rare Diseases Framework in Wales. The Action Plan will address the four priorities set out in the UK Rare Diseases Framework:

  • Priority 1: helping patients get a final diagnosis faster
  • Priority 2: increasing awareness of rare diseases among healthcare professionals
  • Priority 3: better coordination of care
  • Priority 4: improving access to specialist care, treatments and drugs

The meeting will also broach some of the key barriers limiting access to diagnosis in the UK and consider the recommendations identified in  Genetic Alliance UK’s Good Diagnosis report which aim to address these barriers.

We will be hearing from:

– Natalie Frankish, Lead on the Good Diagnosis Project at Genetic Alliance UK

– Claire Swan, Parent Representative at SWAN UK

– Graham Shortland, Chair of the Wales Rare Disease Implementation Group

Members of the rare condition community will be attending this meeting including people living with rare conditions, members from the pharmaceutical industry and the organisations responsible for implementing the Action Plan.

Booking via: eventbrite

Please ask your MS to register interest in the Wales Cross Party Group meeting using our email template. You can personalise it to add information about yourself.

This meeting will also host the AGM for the Cross Party Group on Rare, Genetic and Undiagnosed Conditions. If you are interested in becoming a member of the CPG, please contact rachel.clayton@geneticalliance.org.uk.

Please RSVP to rachel.clayton@geneticalliance.org.uk for more information on the meeting.