#GetRareAware: Fighting Blindness partners with Rare Diseases Ireland on new advocacy campaign

We were delighted to support the launch of a new Rare Diseases Ireland campaign #GetRareAware at the Dáil on March 23. Get Rare Aware aims to bring politicians, medical experts and people living with rare diseases together to take action on under-resourced genetic services at the Department of Clinical Genetics at Children’s Health Ireland (CHI).

300,000 people in Ireland are living with a rare disease. Three quarters of these rare diseases are genetic in origin. People are waiting for over two years for the correct diagnosis and we support the campaign to end the wait.

Pictured are Aine Nolan, aged 2, Ivan Bacik, TD, Declan Meenagh, Fighting Blindness, Neil Ward Fighting Blindness. Rare Diseases Ireland (RDI) launched a new national campaign, Get Rare Aware to bring politicians, medical experts and people living with rare diseases together to take action on under-resourced genetic services at the Department of Clinical Genetics at Children’s Health Ireland (CHI).
Pictured are Aine Nolan, aged 2, Ivan Bacik, TD, Declan Meenagh, Fighting Blindness, Neil Ward Fighting Blindness. Picture by Shane O’Neill, Coalesce.

We are asking you to contact your elected representatives to take action on under-resourced genetic services at the Department of Clinical Genetics at Children’s Health Ireland. More information on the campaign and how you can directly and quickly contact your elected representatives is available at www.getrareaware.ie.

We look forward to sharing the upcoming meetings planned for the campaign over the course of the year directly with you.