Karen North, Member of the Alpha-1 Alliance’s Executive Committee, joined a panel of selected representatives of the rare disease community at a Parliamentary Seminar on specialised commissioning on Wednesday, 6th November.
The objective of the seminar was to inform Parliamentarians about the patients’ perspective on the current level of care provided by the NHS to rare disease patients. Karen spoke about her own experience of living with Alpha-1 antitrypsin deficiency and the need for better patient access to Alpha-1 services and therapies.
The meeting was attended by a number of MPs and Peers and Andy Burnham MP gave his commitment to support and work with the Alpha-1 Alliance to improve the care provided to Alpha-1 patients by the NHS.
The Alpha-1 Alliance will hold a Parliamentary Seminar on Alpha-1 on Tuesday, 10thDecember, at 3pm at Portcullis House. At the event we will launch a policy report that was informed by a national patient survey and that includes recommendations for the improvement of care for Alpha-1 patients. To register for the event please, contact the Alpha-1 Alliance’s Secretariat at firstname.lastname@example.org / 020 3021 1624.
Source: Alpha-1 Alliance 14/11/2013