28th February 2022
On Rare Disease Day (28 February 2022), we are delighted to share a Voices blog from Sally Shillaker, iHV Professional Development Officer – Good Practice Points & Parent Tips, who gives a brief overview on what the day is, why it is important and what can health visitors do.
What is rare disease day?
Rare Disease Day (#RareDiseaseDay) is an international awareness day. It seeks to raise awareness for us all of rare diseases and their impact on individual’s and families’ lives. It was launched 10 years ago by Eurodis which is an organisation that works with many rare disease organisations across Europe to improve the lives of those experiencing rare disease.
Why is rare disease important to understand?
For a disease to be defined as rare, it means that the disease will affect fewer than 1 in 2000 people and, although the incidence of each rare disease is low due to the number of rare diseases (over 6000 different rare diseases) taken together, 1 in 17 people are affected by rare disease. This means that in the UK 3.5 million people are affected by rare disease at some point in their lives. We know that 72% of rare diseases are genetic in their origin and a high percentage of these start in childhood.
What can health visitors do?
- Help raise the profile of rare disease in practice
- Recognise that rare diseases, combined together, are not rare
- Be aware that there may be children on our caseloads with rare diseases
- Work with families and other professionals to support the family’s diagnostic odyssey which may lead to a rare disease being identified
- Advocate for the needs of the child and family throughout
- Liaise with and signpost to organisations that support children and families with rare disease, such as: