News & Events

Patient Networking: Our 3rd Annual Rare Disease Meeting

Last Reviewed 18/10/2017


18/10/18 09:45 - 18/10/18 16:45


Park Inn by Radisson Cardiff City Centre

Mary Ann Street


CF10 2JH

Registration is open for our 3rd Annual Rare Disease Patient Network Meeting in Wales. The event is taking place on 18 October at the Park Inn, Cardiff City Centre and will bring together patients, families, health professionals and researchers with an interest in rare diseases.

Speakers for this year’s event include:

  • Dr Annie Procter, Consultant Geneticist and Clinical Board Director for Mental Health Services in Cardiff and Vale UHB
  • Dr Rachel Butler, Head of the All Wales Medical Genetics Service
  • Dr Kerina Jones, Associate Professor of Health Informatics at Swansea University

We will also be hearing from two patient perspectives talking about their experiences of living with an ultra-rare condition and living with an undiagnosed genetic condition.

Members of the Genetic Alliance UK team will be launching our Welsh Patient Charter on access to orphan and ultra-orphan medicines and talking about our latest research project on mental health.

Places are limited so please do register to attend this free event as soon as possible by clicking here.

We look forward to seeing you for a great day of excellent talks and networking opportunities!

For more information, please contact the Policy & Engagement Manager in Wales, Emma Hughes.

Find out more about our upcoming events and recent news. You can stay regularly updated with Genetic Alliance UK and our members by signing up to receive our monthly newsletter.

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