Home | Contact | Donate | Site Map Links GIG Conference agenda GIG Conference flyer Giving Patients a Voice - GIG Conference   Dear GIG member, GIG Annual Conference  - 8th June 2010, London. You will recall receiving a flyer in the last GIG newsletter highlighting the GIG conference, this is a little reminder to say don't forget to sign up! I know that many of you have already but for those of you who haven't, do drop us a line to ensure we can squeeze you all in. We have excellent speakers highlighting how patient organisations have made huge differences into various aspects of the patient journey, including research, insurance and genetics.  We are also very fortunate to have Sir Nick Partridge from the Terrance Higgins Trust talking to us about their experiences of campaigning for change as a patient organisation.  In the afternoon we will also have workshops looking at various aspects of a national strategy for rare diseases. The conference this year is being held at the offices of the law firm, Clifford Chance.  I am very pleased to say they are offering the space to GIG on a pro bono basis, which is great news as it means we can offer free places to everyone.  We will be on the top floor which offers views across London!  Just to entice you.... If you would like to attend please can you let either myself or Heather Law, Administrator know.  Heather's email is heather@gig.org.uk I look forward to seeing many of you in early June. Best wishes, Melissa Melissa Hillier Genetic Interest Group 020 7704 3141 melissa@gig.org.uk

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Please contact your MP!Dear GIG member, Could you help us in raising

awareness of rare diseases by contact your MP. As you know GIG and Rare Disease UK have hosted events in Northern Ireland, Scotland and Wales over the past two weeks to mark Rare Disease Day 2010 (and it was lovely to see so many of you there!). In England we will be hosting an event later this year after the general election. However, in the meantime we have an Early Day Motion at Westminster which MPs can sign to show their support of rare disease day. An Early Day Motion is a statement which MPs can sign up to if they support it. The more MPs we can get to sign up to it, the more we can demonstrate to the Government the political support for a strategy for rare diseases and for the aims of Rare Disease Day. Dr Evan Harris MP kindly tabled the EDM for us, it reads: That this House welcomes the third International Rare Disease Day on 28 February 2010; notes that there are over 6,000 rare diseases, affecting approximately 3.5 million people in the UK; supports the focus of this year's Rare Disease Day on the importance of research into rare diseases for the millions of patients without a cure; believes that rare diseases should be seen as a public health priority; and joins Rare Disease UK in calling on the Government to act on its commitment to a strategy for rare diseases as demonstrated by the adoption of the European Council Recommendation on action for rare diseases in June 2009. (EDM 978 � International Rare Disease Day) We would like as many MPs as possible to support the EDM so please could you contact your MP and ask them to sign up to it. Below is a template letter/email for you to send. As Rare Disease Day happened recently, it may be speedier to email your MP. Please encourage members of your organisation or contacts to do the same. Download a template letter � Word doc. If you are not sure who your MP is, or if you would like to look up their contact details to email them instead, you can find this online at: http://findyourmp.parliament.uk/ A handy website to email your MP is http://www.writetothem.com/ Thanks once again for your help. Together we can make this Rare Disease Day the most high profile yet. Best wishes, Melissa Melissa Hillier Genetic Interest Group Melissa Melissa Hillier Genetic Interest Group 020 7704 3141 Home Contact Us Subscribe/Unsubscribe to newsletter Genetic Interest Group is a registered