Rare Disease Day 2010 - Please help raise awareness by sharing your story

If you are interested in this study please contact national.contact@wdssg.org.uk or email melissa@raredisease.org.uk for application forms

Rare Disease Day 2010 - Please help raise awareness by sharing your story
Dear RDUK Members,

I am delighted to let you know that Rare Disease UK will be taking a lead in the 2010 UK Rare Disease Day (http://www.rarediseaseday.org/) activities. Rare Disease Day is celebrated internationally on the 28th or 29th February (i.e. a rare day) each year. In 2010 Rare Disease UK will be hosting three parliamentary receptions at the Scottish Parliament, Welsh Assembly and Northern Ireland Assembly, to help raise the profile of rare diseases and the need for the development of a strategy for integrated service delivery.

The theme for the 2010 Rare Disease Day is rare disease and research. “Patients and Researchers: Partners for life”

As with previous years, RDUK will be hoping to gain some media coverage in the run up to the day and surrounding the events we hold. Many publications plan a long way in advance (monthly magazines will already be planning their February editions) and we are therefore looking for a collection of case studies that we can put forward as potential features for journalists. As RDUK is a multi-stakeholder organisation we are particularly keen to have media volunteers from across the broad range of our membership. It would be particularly good if we could get a group of people all interested in the same condition (e.g. a patient, a family, a doctor and an industry rep) this would make for a very good joint case study and would help to put across all sides of the story.

To help us to gather media case studies I have attached here two blank forms, one is for patients and families and one is for professionals (including clinicians, researchers, industry). There is no great difference I have just asked slight variations on the questions. These forms can be downloaded by clicking on them under "Attachments" in the top left hand corner.

If you are interested in being a media volunteer for rare disease day 2010 please do complete one of these forms and return them to me as soon as possible (by 13th November 2009 if possible). I can’t promise that we will use all the stories but we will certainly do our best. If you would like more information or would like to link up with others working in your disease area to form a group case study please do let me know, I’m happy to help where I can.

If you are part of a patient organisation, please could you circulate this email or send out a communication asking for people to come forward as case studies?

I look forward to hearing from you all and hopefully together we can raise awareness of the needs of people with rare diseases.

Best wishes,

Melissa

melissa@raredisease.org.uk

02077 043141