Monthly Report - August 2009

Dear RDUK Member,

Due to the holidays, August has been a slightly less eventful month than July, but we've still been busy here at RDUK. Here are some of the things we have been up to...

Rare Disease UK's Working Groups

The members of the Working Groups, which are examining various aspects of a strategic plan for rare diseases, are now very nearly finalised and we are in the process of organising dates for the first meetings in October. We had a teleconference with the Working Group chairs to discuss among other things, the objectives for the first meeting.

We will, of course, keep you updated on the Working Groups' progress.

ODIG P

We are delighted to announce that Sigma-Tau Pharma Ltd has joined RDUK through the Orphan Disease Industry Group Partnership which was launched in July. We are also in discussion with a number of other companies who are interested in joining.

July meetings

. We met with Mark Bale, Head of Genetics and Andy Earnshaw, Policy Development Manager at the Department of Health where we discussed how we can open up links with GenCAG (Genetics Commissioning Advisory Group) and how the NHS's QIPP agenda (Quality, Innovation, Productivity and Prevention) is compatible with Rare Disease UK's calls for a more effective use of resources to improve services for people with rare disease.

. We had a meeting with Steve Collins, Deputy Director of Policy and Co-ordination and Josie Godfrey from the National Specialised Commissioning Group who were supportive of our aims.

. Alastair met with Steven Fenocchi and Liz Porterfield Genetics Implementation Manager, Healthcare Planning and Liz Porterfield, Head of Clinical Strategies from the Scottish Government to update them on our progress since the last meeting with them.

. We met with John Chandler, Director of Advocacy and International at the PSP Foundation to let him know more about RDUK and he gave us some helpful advice. Following the meeting, PSP Association agreed to join RDUK.

BioNews

RDUK was the headline feature of the 17th August edition of BioNews. To read the commentary please click here

Can you help us?

We are keen to increase awareness and membership of RDUK over the coming months. As part of this we are getting a new flyer designed and we are hoping to increase our attendance at relevant conferences/events. If you are holding/attending/know of any conferences/events that it would be useful for us to attend please let me know: stephen@raredisease.org.uk

Rare Disease UK's fringe event at the Conservative Party Conference

On the 6th October RDUK will be hosting a fringe event at the Conservative Party Conference in Manchester. Following our meeting with him last month, Earl Howe has very kindly agreed to host a debate "Rare diseases: How can the NHS treat the many and the few?". The event is being sponsored by Advocate who also run the All Party Parliamentary Group on Rare Diseases. If you are attending the conference please come along and pass the word on.
Tuesday 6th October, 5:30pm-7pm, Derby Suite, Midland Hotel, Manchester.

Latest organisations to join Rare Disease UK

We were very pleased to welcome two new members to RDUK this month:

. The Primary Immunodeficiency Association (PiA) - PiA exists to support people living with Primary Immunodeficiencies. They liaise with clinicians and immunologists, fund relevant research and campaign for the rights of members in the UK. For more information, please click here
. PSP Association - They are the only UK charity sponsoring research and supporting families with Progressive Supranuclear Palsy (PSP) or Cortico Basal Degeneration (CBD). 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 interest

Stephen Nutt - RDUK Secretariat
Stephen@raredisease.org.uk
02077043141