Rare Disease Day 2012
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level.
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organsing awareness-raising activities converging around the slogan “Rare but strong together”.
Activities will take place across the UK and Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand! Get involved!
What is happening in the UK?
Rare Disease Day at the Royal Holloway University
Following last year’s successful event, Royal Holloway University, London, will be holding another awareness raising event on Rare Disease Day. All the information about the event, including exhibiting opportunities, is available on the following website: http://www.rhul.ac.uk/rarediseaseday or please contact Dr Rafael Yanez rafael.yanez@rhul.ac.uk
You can also follow the Royal Holloway Rare Disease Day Twitter @RDD2012
Rare Disease Day in Northern Ireland
RDUK is an active member of the Northern Ireland Rare Disease Partnership which will be launched officially on Rare Disease Day! In addition, the Patient and Client Council has produced a report looking into experiences of obtaining a diagnosis of a rare disease in Northern Ireland, which will also be launched at the event taking place in the Pavilion on Stormont Estate, Belfast at 11:30am. The event will provide an opportunity to learn more about both of these and to hear from the experiences of patients affected by rare diseases and their carers.
For more information, or to RSVP, please contact Sarah McCandles at the Patient and Client Council sarah.mccandless@hscni.net 028 90 32 1230.
Rare Disease Day in West Yorkshire
RDUK member BRADNET is holding an event in Bradford on Rare Disease Day. There is a high prevalence of rare conditions in West Yorkshire, and this has stimulated collaboration in research, data collection, and development of services.
Further information about the event is available here
The draft agenda is available here
To attend, or for more information about this free event, contact Donna Tattersall at donna.tattersall@bradnet.org.uk or on 01274 224444 (when prompted dial extension 528). There may be room for a few posters or tables for leaflet display by support groups (small payment required).