Useful links
The PNH Research and Support Foundation
Foundation dedicated to funding research to find a cure and new treatments for PNH.
http://www.pnhfoundation.org/PNH Wikipedia
Paroxysmal Nocturnal Hemoglobinuria information.
http://bit.ly/oIIGRRare Disease UK
The National Alliance for people with rare diseases and all who support them.
http://www.raredisease.org.uk/
Politics and policy
Department of Health ask for views on the Coalition Government Health policy
The Department of Health has published a series of consultation documents seeking responses from healthcare professionals, patients and the public. The consultation process ends on 11 October and will inform the Health Bill that will be introduced later in the Autumn.
Posted 03/08/2010The Health Select Committee Members have been announced
On the 12 July the Health Select Committee members were announced. The Committee is appointed by the House of Commons to examine the expenditure, administration and policy of the Department of Health and its associated bodies.
Posted 16/07/2010Questions asked in the House of Commons on the treatment of ultra orphan diseases
Ian Liddell-Grainger (Conservative MP for Bridgwater and West Somerset) asked questions in the House of Commons in relation to the treatment of ultra orphan diseases.
Posted 16/07/2010
Articles
RDUK press release: Newsnight report highlights concerns about GP NHS Commissioning for patients with rare diseases
Newsnight featured a report yesterday, 24th August, outlining concerns about the impact of the government’s plans to introduce GP Commissioning on patients with rare diseases.
Posted 26/08/2010Rare Disease Taskforce Newsletter: The European Commission announces the appointees of the new European Union Committee of Experts on Rare Diseases
The Official Journal of the European Union on 28 July 2010 published the Commission Decision on the appointment of the expert members of the European Union Committee of Experts on Rare Diseases (EUCERD).
Posted 17/08/2010RDUK press release: EUROPLAN Conference 16th November 2010
The RDUK press release invites you to the EUROPLAN Conference which aims to develop a strategic approach for the treatment and support of people with rare diseases.
Posted 06/08/2010