Genetic Alliance UK would like to invite you to a reception on 22 February, 6-8pm to mark Rare Disease Day 2022.
Rare Disease Day is an annual international event raising awareness on the needs of people living with conditions. There are over 6000 rare diseases affecting 175 000 people across Wales. Collectively, rare diseases are not rare.
The reception, hosted by Russel George MS, will provide the opportunity to meet with people affected by rare conditions as well as a wide range of stakeholders with an interest in the area including clinicians, health professionals, patient organisation representatives, researchers and industry.
Following the release of the UK Rare Diseases Framework, we await the imminent launch of the Wales Action Plan for Rare Diseases. We will hear from Eluned Morgan, Minister for Health and Social Services and Dr Graham Shortland on the progress of the Action Plan.
Genetic Alliance UK, the national charity for people affected by rare conditions, will launch a report on the experiences of diagnosis for people affected by rare conditions. This report presents recommendations that we hope the four nations will take into consideration when implementing their Action Plans.
We will be using a new platform for the event. The Remo platform will facilitate networking, letting you get some of the benefits of an in-person reception. As part of the networking session, we would like to offer you a “table” where members of your constituency may come and speak to you about rare conditions.
We hope that you will attend the reception to show your support for people affected by rare conditions.
Register for the event here: https://www.eventbrite.co.uk/e/265012749267
For further information, please contact Rarediseaseday@geneticalliance.org.uk
