Family Whose Lives Were Changed by Rare Disease Plant the
First Bulbs in Special New Garden
On Sunday 11th February, the family of Violet Taylor, who passed away in 2023 at just 11 months old from a rare neurogenetic disorder, planted the first of 700 bulbs to launch a special garden at the Canolfan Iechyd Genomig Cymru (Wales Genomic Health Centre) in Cardiff.
The creation of the garden is the first in a series of events which have been designed to mark Rare Disease Day, which takes place annually on the last day of February. This year, the day is markedly more special or ‘rare’ as it falls on February 29th, a leap year.
Organised by the NHS Wales Rare Disease Implementation Group and with support from the All Wales Medical Genomics Service staff, Wales Gene Park and their relatives, the family began planting these bulbs in the shape of a ‘rare’ four-leaf clover. It is hoped that this will be the first in a chain of gardens to be planted across Wales, with support for the initiative provided by Genomics Partnership Wales, Genetic Alliance UK and Health and Care Research Wales.
These outdoor spaces are designed to bring communities and families together, providing a place for reflection and enabling people with lived experience of rare disease to gather and share their stories. It is hoped the gardens will become a focal point for those beginning their journey with rare disease, as well as those already living with one.
What is Rare Disease Day?
Rare Disease Day aims to shine a light on those around the world living with rare conditions, which although are rare individually, are collectively common. The celebration aims to increase awareness of rare disease amongst the general public and decision makers and ultimately improve lives for rare disease patients and their families.
Did you know…
- 300 million people worldwide live with a rare disease.
- There are over 6000 different rare diseases.
- 72% of rare diseases are genetic.
- 70% of these genetic rare diseases begin in childhood.
To learn more about Rare Disease Day and the events taking place both in-person and online, visit the Genetic Alliance UK website.
