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UK Rare Disease Forum publishes first report


The UK Rare Disease Forum has published its first report on the implementation of the UK Strategy for Rare Diseases.

The Forum was established by the Department of Health as an independent body overseeing progress in introducing the 51 commitments of the UK Strategy, published in late 2013.

The report is the first of several which the Forum will provide to Ministers every two years. It covers progress across the commitments in each of the four devolved health services.

The Alliance has been a member of the Forum since its establishment and is also in membership of the Scottish Rare Disease Implementation Oversight Group. This report is a welcome development in highlighting the progress made to date and the challenges which remain for people with rare and complex diseases.

While respecting the autonomy of the Forum, the Alliance would hope that future reports will be hosted on the departmental websites of all four health administrations, as well as on those of Forum members, to demonstrate the support of statutory partners for its provisions.

The report is available to read here: UK Rare Disease Forum – Progress Report – February 2016