Sitemap
You will find every page of the PNH alliance website listed below.
Homepage
Who we are
Politics and policy
- Ministers amend Health & Social Care Bill
- Health & Social Care Bill delayed
- The Government responds to stakeholder opinion on the NHS reforms
- The PNH Alliance responds to the Health Select Committee Inquiry into commissioning and the Department of Health consultation into commissioning
- International News: Approval expected for the treatment of PNH patients in Australia
- Department of Health ask for views on the Coalition Government Health policy
- The Health Select Committee Members have been announced
- Questions asked in the House of Commons on the treatment of ultra orphan diseases
- The Department of Health publishes the Coalition’s healthcare policy paper
- Question asked in the House of Lords regarding Health Insurance
Campaigns and activities
- PNH Alliance meets Scottish Deputy First Minister
- PNH Alliance campaign activities in 2012
- PNH Alliance campaigns for equitable access in Scotland
- RDUK launch Survey of Patients’ and Families’ Experiences of Rare Disease
- The Travel Insurance Inquiry – update
- Inquiry into travel insurance for people with rare diseases
- Parliamentary reception to launch PNH Alliance
Articles
- PNH Patient to receive funding for eculizumab
- Patient loses her appeal for life-saving NHS treatment
- The Herald reports on patients’ demands to end Scotland’s drug lottery
- Patient dies after health board rejects drug plea
- The Herald reports on Scottish patients fight for treatment
- RDUK publishes a vision for the UK Rare Disease Strategy
- Scottish patients fight for treatment
- RDUK publishes ‘Experiences of Rare Diseases: An insight from patients and families’
- RDUK press release: Joint RDUK and AMRC workshop on rare disease research – 9th December in London
- RDUK press release: Media volunteers needed!