Tuesday, 8 October 2019

Questions (276)

James Browne


276. Deputy James Browne asked the Minister for Health the way in which a person can create an official awareness day in order to have recognition for a disease (details supplied) here; and if he will make a statement on the matter. [40894/19]

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Written answers (Question to Health)

Lissencephaly is one of the approximately 8,000 rare diseases affecting millions of EU citizens.

A Rare Disease Day takes place every year with the aim of raising awareness amongst the general public and decision-makers about all rare diseases and their impact on patient’s lives.

This annual event is scheduled to take place again on 29th February 2020.

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.

The organisers of Rare Disease Day have the full support of my Department who have met with representatives of the Rare Disease Taskforce three times this year and will continue to meet with this important patient representative body on a quarterly basis in the future.