Monthly Report - September 2009

Dear RDUK member,

Here's an update on our activities over the past month...

Conservative Party Conference fringe debate

We've been busy publicising our fringe debate at the Conservative Party Conference in Manchester on the 6th October. Thank you to all of you who wrote to their MPs/AMs/MSPs about the event.

To remind you, the event is open to anyone who is registered to attend the Conservative Conference. If you are attending, please come along, or feel free to pass on details to anyone you know that is attending.

Rare Diseases: How can the NHS treat the many and the few?
Tuesday 6th October, 5:30-7pm - Derby Suite, Midland Hotel, Peter St, Manchester.

I have also attached an e-flyer to this email with further information.

RDUK Working Groups

The members of all of our Working Groups have now been confirmed and dates for the first meetings arranged. We have an excellent range of experts in a variety of fields and we are very grateful to them for agreeing to give up their time to participate in the groups to look into aspects of planning for rare diseases in the UK.

Meetings of the Working Group on the Co-ordination of Research and the Working Group on Commissioning and Planning will be taking place in October and you we will update you on what was discussed in the next newsletter.

September Activities

Some of our activities in September included:

. At the beginning of the month RDUK went to Southampton to meet with the directors of Alpha 1 Awareness UK the charity raising awareness of Alpha 1 Antitrypsin Deficiency and providing support to those diagnosed with the condition. We also gave a presentation about RDUK at their patient information day. For more information about Alpha 1 Awareness please visit their website.
. We participated in a workshop in Birmingham run by the Renal Association and the British Association for Paediatric Nephrology looking into developing a strategy for rare kidney diseases. The final document "Rare Kidney Diseases: An Integrated Strategy for Patients in the UK" will be ready shortly and it will be useful to guide our Working Groups. We will be kept informed of progress in implementing the strategy and we will lend our support wherever possible.
. Along with Will Thomson from the Klinefelter Organisation we met with Bob Russell, MP for Colchester, to discuss rare diseases. Bob is very supportive of the needs of patients with rare diseases and he expressed his desire to help in any way he can. He also agreed to become a member of the All Party Parliamentary Group on Rare Diseases.
. We attended the Rare Disorder Symposium which was organised by Professor Brian Neville as part of the European Paediatric Neurology Society meeting in Harrogate. The event was a good opportunity to promote RDUK as well as to learn about various rare neurological conditions and the issues surrounding them.

Rare Disease Day 2010

We have begun to make preparations for Rare Disease Day 2010 which is taking place on the 28th February. The theme of Rare Disease Day 2010 is research. To mark the occasion, Rare Disease UK will be hosting parliamentary receptions in Wales, Scotland and Northern Ireland to raise political awareness of rare diseases.
. Helen Mary Jones AM, Plaid's Spokesperson for Health and Social Services has very kindly agreed to sponsor our event at the Welsh Assembly. It will be taking place on the evening of the 24th February. Those of you in Wales please make a note in your diaries!
. We are pleased that Christine Grahame MSP has agreed to sponsor the event at the Scottish Parliament. Christine is the convenor of the Health and Sport Committee. We are currently in the process of organising a date for this event.
. Planning is underway for the event in Northern Ireland and there will be more information in next month's newsletter.

House of Common's Inquiry

We issued a joint response with the Genetic Interest Group to the House of Commons Health Committee Inquiry into Commissioning. Our response is attached to this email.

Reminders

We are keen to increase awareness and membership of RDUK over the coming months. As part of this drive we have had a new flyer printed and we are looking to increase our presence at relevant conferences/events. If you are holding/attending/know of any conferences/events that it would be useful for us to attend or provide information at please let me know: stephen@raredisease.org.uk

OrphaNews Europe

RDUK's work was picked up by OrphaNews Europe - the bi-monthly electronic newsletter of the European Commission's Rare Disease Task Force. To view the newsletter please click here

Latest organisations to join Rare Disease UK

We are delighted to welcome four new organisations to RDUK:

Cerebra - Cerebra is a unique charity set up to improve the lives of children with brain related conditions through researching, educating and directly supporting children and their carers. For more information please click here

Uveitis Information Group - The UIG is a small charity which produces information for healthcare professionals and patients; supports patients through their diagnosis and treatment; raises awareness and works to improve services for people with uveitis. For more information please click here

Pelvic Pain Support Network - The Pelvic Pain Support Network provide support information and advocacy for those with pelvic pain, their families and carers. They seek to promote education about pelvic pain and encourage and support research to increase knowledge and understanding of the impact of pelvic pain. For more information please click here

Advocacy for Neuroacanthocytosis Patients - "the Advocacy" was set up to improve the lives of patients suffering from a group of neurodegenerative diseases that are characterized by anomalies in the membranes of patients' red blood cells and the gradual deterioration of parts of the basal ganglia that leads to severe movement disorders and often, early, unexpected death. For more information please click here

If you have any questions on any of these matters, please do not hesitate to contact me.

Thank you for your continued support,
Stephen Nutt - RDUK Secretariat

Stephen@raredisease.org.uk
02077043141