February 29th, 2012 marked the Fifth International Rare Disease Day. On this day hundreds of patient organisations from more than 50 countries worldwide organised awareness-raising activities converging around the slogan “Rare But Strong Together”.
Eurordis launched a specially produced promotional video highlighting Rare Disease Day in Europe. The video was made in Dublin and featured real people affected by rare conditions. Six people from Ireland, each with a different rare condition, featured in the video. Josephine McGuirk, an Alpha-1 patient was one of the six participants. The message is simple – It’s not unusual to have a rare condition. Look out for us and you’ll see how many we are! You can watch this video here.
To tie in with the video, GRDO created a postcard campaign to highlight Rare Disease Day in Ireland. Each postcard featured a character from the video and a short message about Rare Disease Day. The postcards were delivered to politicians and other public figures, as well as to media representatives across Ireland.
An “Easy Guide” has been produced to increase awareness about the challenges of living with a rare disease and to highlight the priorities that need to be included in the forthcoming National Plan for Rare Diseases (NPRD) in Ireland. The guide can be downloaded here and pages 9 and 10 have an interview with Josephine McGuirk, an Alpha-1 patient.
The aims of this “Easy Guide” are to:
• Explain what a rare disease is
• Highlight the challenge of living with a rare disease in Ireland
• Highlight priorities that should be included in the National Plan for Rare Diseases in Ireland
The Alpha One Foundation is part of the Rare Disease Taskforce, which was organised by the Medical Research Charities Group (MRCG). The Rare Disease Taskforce is acting as a catalyst for the development of better health care services for people with a rare disease in Ireland. It aims to highlight key developments in relation to rare diseases in Ireland and the EU context and to communicate issues related to the forthcoming National Plan for Rare Diseases in Ireland.