pictured in photo, left to right: Lord Mayor of London, Councillor Eibhlin Byrne; Senator Deirdre de Burca; Avril Daly, Genetic & Rare Disorders Organisation

Ireland Celebrates International Rare Disease Week 2009

Groups supporting people affected by rare disease celebrated International Rare Disease Week from the 22 to the 28 of February 2009.

There are between 6,000 and 7,000 identified rare diseases worldwide and it is estimated that between 6 and 8% of the population will at some time in their lives be diagnosed with such a condition. Doing the maths, we know that there are approximately 140,000 with a rare disease in Ireland but these figures imply that there are a further 200,000 Irish people who have yet to be diagnosed. Information on diagnosis, services and ongoing training for Healthcare Practitioners in identifying Rare Disease conditions is vital going forward. During International Rare Disease week Irish groups such as the Genetic and Rare Disorders Organisation (GRDO) the Irish Platform for Patients Organisations Science and Industry (IPPOSI) and the Medical Research Charities Group (MRCG) called on the government to engage in dialogue with stakeholders to establish a National Plan for Rare Disease that will work for Ireland.

On Wednesday February 25 a conference entitled ‘Focus on Rare Disease in Ireland – What is our National Plan’ was attended by patients, scientists, clinicians, industry representatives and the Health Service Executive (HSE).  The objective of this event was to examine how the country can develop a successful national plan or framework to address rare diseases. The meeting highlighted how important it is for all the stakeholders in the Rare Disease community in Ireland to work together and a commitment was given to do so by the HSE and all parties on the day.

The rare disease community discussed the current situation in Ireland and heard from experts in other Member States within the EU, including Christel Nourrissier from EURORDIS who presented on the French plan now entering its second phase. It is hoped that Ireland will learn from the experiences of other states to avoid any pitfalls and work with all stakeholders to ensure the development and implementation of a national plan for rare diseases at the earliest opportunity. 

A newsletter article on this conference will be published in the May 2009 issue of the Eurordis newsletter.

Rare Diseases Week culminated with a family day organised by GRDO – ‘Patient Care: A Public Affair’ - from 11am-1pm on Saturday February 28 for rare disease patients and their families at the Mansion House in Dublin. The Lord Mayor of Dublin Counsellor Eibhlin Byrne hosted the event which was attended by many of the voluntary organisations providing support to those affected by Rare Disease in Ireland.

Senator Deirdre de Burca who is spokesperson on Health and Children for the Green party launched The Voice of 12,000 Patients, a new book published by The European Rare Disorders Organisation EURORDIS. The younger members of the community enjoyed a musical workshop and face painting.

For more information see www.rarediseaseweek.ning.com