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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

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Supporting Documents

To ensure that the views of all stakeholders are taken into account, and that an effective UK plan for rare diseases is produced by the UK’s health departments, we need anyone with an interest in rare diseases to respond to the public consultation; individual patients, patient organisations, clinicians, healthcare professionals, researchers and those in industry. The more informed responses health departments receive the better chance of creating an effective plan for rare diseases.

The consultation has been drawn up collaboratively by each of the UK’s four health departments and can be downloaded from the Department of Health website: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_132880

To help you in responding to the consultation on a UK rare disease plan we have produced supporting materials.

Please note that the consultation deadline is the 25th of May 2012

Our recommendations for a plan:

In 2011 we published a report 'Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy', outlining what we would like to see in the UK rare disease plan (the report is available to download here). It includes a series of recommendations for the UK’s health departments across research, diagnosis, planning, information and coordinated care. It may help you to think about what a rare disease plan might look like.

How our recommendations compare to the consultation:

We have produced a document which compares the consultation document with the recommendations from our Improving Lives report. This may help you to structure your response and to assess the strengths and weaknesses of the consultation document. You can download this here.

Practical Guidance:

We have published an advice document to help you respond to the consultation, which includes practical suggestions on the structure of your response and what to include. You can download this here.

Webinars:

We ran four webinars tailored to each home nation which included a presentation by Alastair Kent, Chair of Rare Disease UK, as well as audience questions. You can download the live recording of each webinar or the presentation slides from the links below.

Due to technical difficulties some recordings are missing sections at the beginning, please refer to the slides for areas missing.

Northern Ireland - http://www.anymeeting.com/RDWebinarNI/EA56DA888548

Download the PDF of the slides

Wales - http://www.anymeeting.com/RDWebinarWales/EA56D981844B

Download the PDF of the slides

Scotland - http://www.anymeeting.com/RDWebinarScot/EA56D988894A

Download the PDF of the slides

England – http://www.anymeeting.com/RDWebinarEngland/EA56D880804C

Download the PDF of the slides

Frequently asked questions:

All of the questions asked throughout the webinars have been answered in a FAQ document, available to download here.

Events:

You can find the presentations from each event here.