New office for rare diseases being established – Burke

Fine Gael Cork North Central Senator, Colm Burke, has welcomed the news that a National Office for Rare Disease is currently being established in the HSE.

“I recently raised this matter in the Seanad, looking for an update on the establishment of a new national office for rare diseases. The National Clinical Programme for Rare Disease was initiated in 2013 and is a joint programme between the HSE and the Royal College of Physicians in Ireland with a view to improving and standardising the quality of care for patients with rare diseases in Ireland. The National Rare Disease Plan for Ireland was then published in July 2014 and recommended the setting up of a national office for rare disease. I am pleased to say that the Minister for Health has now confirmed to me in writing that this office is currently being established in the HSE.

“Rare diseases are life threatening or chronic debilitating conditions affecting no more than five in 10,000 people. As a member of the Network of Organisations for Genetic and Rare Disorders I know the importance of having a national office focused on them. There are four main functions proposed in the National Office: the mapping and validation of Centres of Expertise, the Orphanet Service, a helpline and overtime, a role in rare diseases surveillance. It is very positive that half year funding for 2015 of €100,000 has been provided with €200,000 on a recurring basis for 2016. Staffing at the office will include an information scientist, a genetic counsellor and an administrative assistant.

“The recommendation on the home based Orphanet team is to provide information on rare diseases and orphan drugs which are drugs used for the diagnosis, prevention or treatment of life-threatening or very serious diseases or disorders that are rare. This team is to be located in the National Office to provide accurate information about issues including specialised clinics, treatments, medical laboratories, registries and clinical trials.

“I commend Minster Varadkar for taking rare disease seriously and moving forward to implement his plan, including the establishment of a national office.”