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Rare Disease Day 2016

January 18, 2016 Alpha1 Admin Comments Off

Rare Disease Day takes place every year in February worldwide in order to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.This years Rare Disease Day will fall on February 29th. In Ireland the day will be marked by a conference in Dublin castle with more details on this to follow.

The National Rare Diseases Office was established in June 2015 by the Health Services Executive (HSE) and aims to  provide current and reliable information about genetic and rare diseases to patients, families and health professionals. It is staffed by Information Scientists who have significant experience working with individuals and families affected by rare disorders.The National Rare Disease Office (NRDO) over the last six months have been working on web information and now have a microsite available though the HSE website at www.hse.ie/rarediseaseoffice. Their new microsite aims to provide information to the public, health professionals, individuals with a rare disease and their families etc on specific disease information, patient support groups, current research and clinical trials available among others.

For information on events happening for Rare Disease Day throughout Europe and worldwide click here.

rarediseasedayguide16

 

 

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