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PNH alliance – A partnership for rare diseases

Useful links

  1. EURODIS

    A non-governmental patient-driven alliance of patient organisations and individuals.

    http://www.eurordis.org/

  2. National Organization for Rare Disorders

    A federation of voluntary health organisations dedicated to helping those with rare diseases

    http://www.rarediseases.org/

  3. PNH Source

    Spanish PNH resource website.

    http://www.pnhsource.eu/

Politics and policy

RSS feed

  1. The PNH Alliance submits response to National Rare Disease Plan consultation

    Posted on 18th May 2012

  2. Health and Social Care Bill receives Royal Assent

    Posted on 11th April 2012

  3. Consultation on national rare disease plan launched

    Posted on 26th March 2012

Articles

RSS feed

  1. PNH Patient to receive funding for eculizumab

    Posted on 17th January 2012

  2. Patient loses her appeal for life-saving NHS treatment

    Posted on 22nd September 2011

  3. The Herald reports on patients’ demands to end Scotland’s drug lottery

    Posted on 22nd September 2011