Website and Blog for the Sam McMahon Trust

The National Organisation for Rare Diseases (NORD) and others around the world will observe Rare Disease Day on February 28th.

Millions of patients and their families will share their stories and experiences to raise awareness about rare diseases.

In Ireland, Rare Disease Day will be marked by a public meeting, Patients and Researchers: Partners for Life at the European Union House on Dawson Street. For more on information about Rare Disease Day or to attend the meeting, click here.

February 28th 2010 marks Rare Disease Day in Ireland. The main objective of the day is to raise awareness with policy makers and the public of rare diseases and the impact that they have on patients’ lives.The Genetic and Rare Disorders Organisation are celebrating this day in the Mansion House in Dublin from 11am to 1pm. Families and those interested in hearing about the supports available to those who have rare diseases in Ireland are welcome, and  children who come along with parents, will be able to attend music workshops and have face-painting done.

There will be over 20 organisations present to provide  information on support and incentives that are underway on the national and international stage. The event will be hosted by the Lord Mayor of Dublin Councillor Eibhlin Byrne.