Rare Diseases Committee

Chairman: C Mark Taylor

The main task of the Rare Diseases Committee is to implement the rare disease strategy for the Renal Association and promote development of and establishment of rare disease working groups.

The Rare Disease Committee will support working relations between the Renal Registry and the rare disease working groups to establish rare disease registries.

Update from the Committee

"Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy"

The UK government has signed up to the European Union recommendation to have a strategy for rare diseases in place by 2013. Government requires a credible consultation process for that to happen. "Improving Lives, Optimising Resources", by Rare Disease UK (RDUK), released in England at the House of Commons on 28th February, encapsulates that consultation. There is much to commend in this report.

The Renal Association is a member of RDUK. Not surprisingly the Renal Association's "Rare Kidney Diseases: an integrated strategy for patients in the UK" developed over a very similar period harmonises with the RDUK vision. Both indicate the need for a truly joined up approach that empowers patients, improves diagnosis and clinical pathways and promotes translational research. Both call for innovation.

"Improving Lives, Optimising Resources" demands better commissioning of services.  However, the white paper "Equity and Excellence" indicates a tide flowing strongly towards more devolved commissioning, and one wonders how this will play out for rare conditions. Will it support our Rare Disease Working Groups, as an example of empowering clinicians and patients? Publication of the RDUK paper is not the end of lobbying for rare diseases, not even the beginning of the end. It raises a standard for those who need to keep the pressure on policy makers over the next few months. It is an important read for those thinly scattered clinicians and patient groups who shoulder the day to day responsibility for someone with a rare disease.

Click here to view the report

Downloads

  1. Committee Meeting Minutes - 02.09.11
    .pdf file (59.34 KB)
    September 13, 2011
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  2. Committee Meeting Minutes - 08.06.11
    .pdf file (54.50 KB)
    June 30, 2011
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