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Issue No. 123
Volume 1 2013
Welcome to our latest Hot News and for joining us in celebrating Raynaud’s Awareness Month. Many of you across the UK are holding events on our behalf and we are very grateful for your time and support to raise awareness, and funds, for our organisation. Please do send in your pictures from your events and let us know what events have worked well or what could be improved. We value your feedback.
In this issue...
“Rare Disorders without Borders” - time to celebrate Rare Diseases Day in February Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation. Not only is it Raynaud’s Awareness Month in February but in Europe and beyond, the last day of February is designated ‘ Rare Disease Day’. There are more than 6000 rare diseases - genetic, serious, chronic and often debilitating including scleroderma and other auto-immune conditions, affecting more than 60 million people in Europe and the US. In Europe, including the UK, the idea is to develop National Plans for Rare Diseases by the end of 2013, so that policies in healthcare and social services which have been useful to those living with rare diseases in one country can be coordinated and eventually harmonized across Europe. EURORDIS is coordinating the work at the international level and in 2013 the idea is to look at the potential to co-ordinate research and highlight Rare Diseases in health policy at national level. As well as flagging up your activities and thoughts on the RSA’s Facebook and Twitter pages, make sure you do the same thing with Rare Disease Day social media pages! facebook.com/rarediseaseday - ‘Like’ the RDD Facebook page, view the timeline and take part in the conversation on Rare Disease Day. Follow Rare Disease Day on Twitter (@rarediseaseday). Re-tweet us and use the hashtag #raredisease So, on the last day of February at 12:00 noon (GMT), why not join and raise YOUR hands to show solidarity with rare disease patients around the world! Record the event with a photo and share it with the RSA too!
Meet the RSA team Page 3
Doc Spot Page 4
Prescription Charges Coalition Watch out for the report in March! The Raynaud’s & Scleroderma Association is working as part of an alliance of over 20 organisations in England concerned with the effects of prescription charges on people with long term conditions. Currently, there is a list of exemptions for certain specific medical conditions. The list, drawn up in 1968, was revised only once, to add cancer, in 2009. The list does not cover Raynaud’s or scleroderma. A new report by the Prescription Charges Coalition is due to be published in March 2013. Its findings and recommendations will be based on a survey conducted by members last year. Collectively and individually members of the Alliance, including the RSA, will promote its findings to help influence policy makers in government and planners across the country who will form part of the new 'health and social care landscape'. The report, together with a briefing paper summarising the key points, will be available on the Prescription Charges Coalition website www.prescriptionchargescoalition.org.uk. Perhaps members and supporters of the RSA in England might wish to promote its findings to their local MPs? The situation doesn’t apply to those living in Scotland, Northern Ireland and Wales where prescriptions remain free.
Nikki’s Story Page 8
Fundraisers Page 11