Ride for Rare 2024- Genetics teams across the UK and Ireland raise over £12000 in aid of individuals with rare disease!

On Sunday 15th September, nearly one hundred genetics professionals from across the UK and Ireland embarked on a number of bike rides, with one motorbike group, to raise money for charities who support those living with rare diseases, with the total amount raised now standing at over £12000.

Ride for Rare, which was last completed in 2013, has been reinstated over ten years later by Karenza Evans, a Genetic Counsellor at the All Wales Medical Genomics Service (AWMGS), with the invaluable support of Flora Joseph, also a Genetic Counsellor for AWMGS.

Riders travelled between genetic facilities, with others taking circular routes; some of which had significantly challenging hills. Routes covered Braemar to Aberdeen, Boyne Valley to Lakelands Greenway, Ireland, Cambridge, Cardiff to Bristol, Glasgow to Edinburgh, London to Brighton, Manchester to Liverpool, Nottingham, Southampton to Salisbury and a motorbike team travelled across Salisbury White Horses. Throughout the day, all teams encouraged each other by posting start times and photos of the teams along the way; all in aid of fundraising for SWAN UK (Syndromes Without A NAME), the only dedicated support network in the UK for families affected by undiagnosed genetic conditions – those so rare that they often go without a name and Unique, who provide essential support, information and networking opportunities for families impacted by rare chromosome and gene disorders.

This remarkable collaboration exemplifies the strong sense of community among genetics professionals across the UK and Ireland, all united in their commitment to ensuring that patients with rare diseases receive the support they deserve. It also raises awareness of the impact of rare diseases, which affect approximately 3 million people in the UK, highlighting the need to improve access to care for these patients and their families.

AWMGS would like to extend a huge thank you to all those who helped to organise this endeavour and those who took part to raise so much for these invaluable charities.

If anyone else would like to donate, you can do so via the GiveWheel website.