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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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Rare Disease Policy

RDUK respond to relevant policy consultations and inquiries to represent the views of people with rare diseases and the organisations that support them.

Below are some of our recent policy responses.

Consultations

Consultation on the United Kingdom Plan for Rare Diseases - England

Consultation on the United Kingdom Plan for Rare Diseases - Scotland

Consultation on the United Kindgom Plan for Rare Disease - Wales

Consultation on the United Kingdom Plan for Rare Diseases - Northern Ireland

Welsh Government, Together Against Cancer delivery plan for NHS Wales (pdf) March 2012

Future Forum 2: integration of services (pdf) November 2011

Royal College of General Practitioners, Consultation Paper on Integration of Care (pdf) November 2011

Future Forum 2: education and training (pdf) October 2011

Future Forum 2: how information can be improved (pdf) October 2011

National Quality Board engagement exercise on NICE Quality Standards (pdf) October 2011

All Wales Policy: Making Decisions on Individual Patient Funding Requests (IPFR) (pdf) August 2011

Department of Health, Social Services and Public Safety: Living with Long Term Conditions - A Policy Framework (pdf) June 2011

General Medical Council: Good practice in prescribing and managing medicines and devices (pdf) June 2011

Quality 2020: A 10-year Quality Strategy for health and social care in Northern Ireland (pdf) April 2011

Department of Health: A New Value-Based Approach to the Pricing of Branded Medicines (pdf) March 2011

Department of Health: Liberating the NHS - An Information Revolution (pdf) January 2011 

Department of Health: Liberating the NHS - Commissioning for patients (pdf) October 2010

Department of Health White Paper: Equity and Excellence - Liberating the NHS (pdf) October 2010

Department of Health Consultation on Strengthening National Commissioning (pdf) February 2010

Department of Health Consultation on an Innovation Pass Pilot (pdf) February 2010 
 

Inquiries

House of Commons Health Committee Inquiry into Commissioning (pdf) September 2009