Rare Disease Day – 28th February, 2019
The 12th annual Rare Disease Day will take place on Thursday 28th February, 2019 and is aimed at raising awareness amongst the general public and decision makers about rare diseases and their impact on patient’s lives. The theme of Rare Disease Day 2019 is, ‘Bridging Health and Social Care,’ and will be marked with an all-island conference hosted in Dublin.
Among the topics under discussion will be:
- patient experiences of health and social care services
- best practices in delivering coordinated services to patients
- the current state of rare disease plans North and South.
1 in 15 people will live with a rare disease at some point in their life and there can be a dearth of expertise and knowledge about some rare diseases, simply because they are so rare. There is no cure for the majority, of rare diseases and many go undiagnosed. Therefore, building awareness of rare diseases is of the utmost importance. The main objective of Rare Disease Day is to bridge the gaps in the coordination between medical, social and support services in order, to tackle the challenges that people living with a rare disease face every day.
The HSE National Clinical Programme for Rare Diseases was established in 2013 and the National Rare Disease Office was established by the HSE in 2015. The purpose of the National Rare Disease Office is to provides current and reliable information about genetic and rare diseases to patients, families and healthcare professionals.
Minister Harris wished all concerned great success with the 12th Annual Rare Disease Day saying, “I would like to assure all involved that my Department is fully committed to working with the HSE on the continued implementation of the recommendations contained in The National Rare Disease Plan. In that context my Department met with the Rare Disease Task Force on 20th February and will continue to meet with this important patient representative body throughout the course of 2019. My Department will continue to meet with the HSE National Clinical Programme to ensure that this important programme is fully supported”.