Today a new report has been published by the Welsh Cross Party Group for Rare, Genetic & Undiagnosed Conditions.
The Welsh Cross Party Group for Rare, Genetic & Undiagnosed Conditions held its inaugural meeting in the Senedd in September 2019. Over the last 18 months, the group, chaired by Angela Burns MS and administered by Genetic Alliance UK, has heard a broad range of experiences. Bringing together people affected by rare conditions, patient group representatives, health care professionals and researchers, this report identifies a series of recommendations which would improve the lives of people affected by rare conditions across four broad themes: the effect of rare diseases on mental health, access to orphan medicines, the impact of COVID-19 on those affected by rare conditions and a future Welsh Action Plan to implement the UK Rare Diseases Framework.
Thank you to all that attended and contributed to discussions throughout the tenure of the Cross Party Group, this input has been invaluable in shaping the recommendations in this report.
Finally, our greatest thanks to Angela Burns MS who has been an incredible Chair and champion for those affected by rare diseases in Wales during her time as a Member of the Senedd.
For more information, please get in touch with Emma Hughes, Policy & Engagement Manager (Wales), Genetic Alliance UK – [email protected]create new email