Rare Disease Day 2016

Dublin Castle played host to the annual Rare Disease day conference on February 29th. Patient groups, members & health reformers gathered to discuss how best to implement the National plan; a detailed strategy which outlines suggestions for improving services and care of people with rare diseases (health.gov.ie/wp-content/uploads/2014/07/EditedFile.pdf).

The new national rare disease office, which opened in the Mater hospital in 2014, is charged with the role of overseeing this plan. The information specialists there provide up to date information on nearly 6,000 rare diseases through the use of an online database (www.orpha.net). This facility also provides information on ongoing trials and specialists for these diseases.

On the agenda was cataloging of patient history with the use of a central database. Ideally, medical professionals could access this information to provide a more standardized care pathway with defined clinical criteria. Researchers could collate the data to aid the understanding of genetics in diseases and ultimately treatments would be unveiled more quickly. The role of technology in the HSE was also discussed. Electronic Patient files could be accessed centrally by all professionals involved in their care and this would reduce waiting times and make delivery of care more efficient.

The Patient voice was highlighted as crucial to the progress of the plan and empowerment initiatives such as rareconnect encourage this (www.rareconnect.org).

The conference acted as a platform for small groups such as Ataxia Ireland to come together to act as one voice as together we will progress faster.

Rare Disease Day 2016

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