Monday 27 February 2012
Saturday 25 February 2012
IRELAND
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Welcome to Rare Disease Day 2012 in Ireland
Image: Lauren Shaw, age 8. Lauren features in the promotional video produced by Eurordis in Dublin. Lauren has Friedreichs Ataxia.
The Genetic and Rare Disorders Organisation (GRDO) is a non governmental organisation acting as a national alliance for voluntary groups representing the views and concerns of people affected by or at risk of developing genetic or other rare disorders.
The mission of the Genetic and Rare Disorders Organisation is to provide a strong voice for voluntary groups representing people with or at risk of developing genetic or other rare disorders in order to achieve better support and services.
The Genetic and Rare Disorders Organisation acts as a watchdog in relation to legislation concerning disability to ensure that the rights of people with genetic or other rare conditions are protected.
To mark Rare Disease Day 2012 in Ireland GRDO is planning a number of initiatives:
Patient Survey
GRDO is currently gathering information on the experiences of people in Ireland with rare conditions. GRDO, together with the Medical Research Charities Group (MRCG) and the Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) and their patient representatives, will use this information to assist the National Rare Diseases Taskforce ('Towards 2013 - the National Plan for Rare Diseases') to engage with the Rare Diseases Steering Committee of the Irish Government’s Department of Health.
This initiative aims to ensure that the voices of people affected by rare diseases are heard by the decision makers in health and social care. With the information we gather, we will produce a report which summarises people’s experiences and make recommendations for better support and services. We hope to publish initial results of the survey on Rare Disease Day this year.
Rare Disease Day video and postcard campaign
As most of you know, Eurordis will shortly launch a specially produced promotional video highlighting Rare Disease Day in Europe. What you may not know is that this video was made in Dublin and features real people affected by rare conditions. To tie in with the video, GRDO is creating a postcard campaign to highlight Rare Disease Day in Ireland. Each postcard will feature a character from the video and a short message about Rare Disease Day. We will deliver them to politicians and other public figures, as well as to media representatives across Ireland.
The video will soon be launched on the Rare Disease Day channel on Youtube
Rare Disease Easy Guide
GRDO is also producing a new Easy Guide public information booklet on rare disease in Ireland for launch on Rare Disease Day 2012.
Media awareness
In the weeks before Rare Disease Day GRDO will also target media outlets to highlight rare disease issues and share ‘real life’ stories from those affected by Rare Disease.
Find GRDO on Facebook
Follow GRDO Ireland on Twitter
s_gillece@hotmail.com
Tarlov Cyst Rare Disease Patient,
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