Monthly Report - July 2009

Dear RDUK Member,

This is the first monthly update to keep you informed of the goings on at Rare Disease UK.  July has been my first whole month providing the secretariat for RDUK and it has been a busy one at that! Here are some of our activities this month...

Rare Disease UK Working Groups

We are pleased to inform you that we have confirmed the chairs of the Working Groups and earlier this month we had the first meeting of the chairs to discuss how the Groups will proceed.

The Working Groups are:

Co-ordination of Research - Chaired by Dr Hillary Burton, Programme Director - Phg Foundation

Prevention and Diagnosis - Chaired by Dr Douglas Wilcox, University of Glasgow Institute for Medical Genetics

Commissioning and Planning - Chaired by Adrian Pollitt OBE, Former Director of National Specialised Commissioning

Patient Care and Information - Co-Chaired by Andrew Wilson Webb, CEO - Rarer Cancers Forum and John Dart, Director of Charitable Activities - DebRA

Delivering Co-ordinated Care - Dr Atul Mehta, Consultant Haematologist - Royal Free Hospital

The purpose of the Working Groups is to look into various aspects of planning for rare diseases and to come up with a set of measures to evaluate the provision of services and support for people with rare diseases in the UK. Hopefully this will help the Government deliver on the EU Council recommendation to adopt plans or strategies for rare diseases. The Working Groups will be meeting over a period of approximately 18months and we hope to have the final document ready by March 2011.

We are currently in the process of finalising the members of the Working Group. We are also looking to establish a wider network of contacts to feed evidence into the Groups, more information on this will follow, but if you feel like you could contribute in any of the Working Group areas, please contact me - Stephen@raredisease.org.uk

Letters to MPs

A big thank you to everyone that participated in the letter-writing campaign to MPs/ MSPs/ AMs/ MLAs recently. Establishing a strategy for rare diseases will not happen overnight and it is important that we keep politicians engaged and informed along the way. This is especially important given the big turnover in the number of MPs expected after the next election. If you haven't received a response yet, please can you send a copy to me when you do?

At a UK level, whilst letters received from the Minister have been fairly non-committal previously, we have just received a far more encouraging letter from the new Minister for Public Health, Gillian Merron MP saying that the Department of Health is taking positive action to investigate how a strategy for rare diseases can be implemented in the UK. A copy of the letter is attached to the email.

ODIGP

The Orphan Disease Industry Group Partnership was launched this month to enable Pharmaceutical Companies that are not a Member of the Association of the British Pharmaceutical Industry (ABPI) to join Rare Disease UK and increase our stakeholder base. For more information about ODIGP, please contact Jackie Holding at jackie.holding@cancerandrarediseases.com

RDUK Management Committee

This month we welcomed two new members on the Management Committee:

. Laura Gilbert was appointed following her excellent work in providing the secretariat for RDUK previously and her extensive knowledge of the field will be an asset to the Management Committee.
. Steve Potter from Genzyme will be representing ODIGP on the Management Committee and is very keen to apply his knowledge of the Pharmaceutical Sector to aid RDUK's campaign.

July Meetings

Rare Disease UK met with the following people during the month:

. We met with John Murray of the Specialised Health Care Alliance to discuss how we can work together to achieve our aims.
. In the House of Lords we met with Earl Howe, the Conservative Health Spokesperson in the Lords to discuss our campaign and potentially hosting a fringe event at the Conservative party conference.
. We had one of our regular meetings with Dr Ed Jessop from the National Commissioning Group to keep them updated on our activities.

Scotland
. No meetings in Scotland this month, but we will be meeting with Steven Fennochi from the Healthcare Planning Division of the Scottish Government in August. Meetings were arranged this month with Dr Richard Simpson MSP, Deputy Spokesperson on Health for the Labour Party and Mary Scanlon MSP, Shadow Cabinet Secretary for Health and Wellbeing.

Wales
. In Cardiff we met with Peter Lawler, Acting Head of the Welsh Assembly Government's Community, Primary and Health Service Policy Directorate; Cathy White, Head of Policy for Major Conditions and Clinical Support Services and Dr Chris Riley Head of Health and Social Services Strategy. They were very supportive of RDUK's aims and agreed to communicate and co-operate with us where possible.

Northern Ireland
. We are very pleased to announce that Dr Fiona Stewart has agreed to represent RDUK in Northern Ireland and to keep us abreast of developments there. Dr Stewart is a Consultant in Medical Genetics at Belfast City Hospital.
. At the beginning of the month, RDUK's chair, Alastair Kent had a very positive meeting with John Compton, the Chief Executive of the Health and Social Care Board in Northern Ireland. Mr Compton was interested in our campaign and has tentatively agreed to arrange a meeting of the key figures in Northern Ireland to discuss how to take forward a strategy for rare diseases.
. Lord Browne of Belmont MLP very kindly submitted a written Assembly question to the Minister for Health and Social Services asking about his proposals for implementing plans or strategies to deal with rare diseases. The Minister responded that officials from all for nations would be meeting shortly to discuss the matter.

Latest Organisations to Join RDUK

The number of stakeholders in RDUK continues to grow and this month we were pleased to welcome:

. The Cavan Tommy Hoey Trust (Ireland) is dedicated to fighting XLP and HLH. For more information please click here.

. The Renal Association - the UK professional body of nephrologists and renal scientists is developing a UK wide strategy for clinical care, audit, research, training & education for rare kidney diseases. 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