In recognition of Rare Disease Day on February 28th, HRW teams gathered together to raise awareness for rare diseases. We:
Told stories of the impact of rare disease on respondents as well as experiences from family and friends
Brought in some cakes or bakes with rare and unusual ingredients (including Guinness, green tea, mashed potato, and garden peas)
Held a raffle to win a crocheted spider-man made by our own Ella Heath
Held rare themed quiz to win all-important bragging rights (congratulations to Faye Holmes)!
All money raised went to an amazing charity that helps a child with a life-limiting rare disease, Nonketotic hyperglycinemia, NKH for short, is a rare genetic disorder that affects 1 child in every 60,000 born: http://www.josephsgoal.org and we raised £253 in total on behalf of this charity for rare disease day.
Events were held in 90 countries worldwide for rare disease day and a recent video highlights the reality of living with a rare disease: for example, doing a google search looking for answers and receiving no results: http://www.rarediseaseday.org/videos
The slogan of this year’s rare disease day is: ‘With research, the possibilities are limitless’ – and we continue to work for this future together.
Thanks to everyone who took part, donated, baked and ate!