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!

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