Scottish Alpha-1 patients – the campaign needs you!

Alpha-1 Alliance hosts seminar on Alpha-1 at the Scottish Parliament on 19th November The Alpha-1 Alliance warmly invites Scottish Alpha-1 patients and their family members to attend our Parliamentary Seminar on Alpha-1 Antitrypsin Deficiency (Alpha-1) on Wednesday,19th November, in the Scottish Parliament.

The Alliance is holding this event to highlight the unmet medical need experienced by the Scottish Alpha-1 community with politicians and NHS Scotland officials, and to ask for their support in improving the level of care and accessibility of adequate health services for Alpha-1 patients.

The findings of the first ever national survey of Alpha-1 patients are being summarised in a policy report on Alpha-1 that will be published prior to the Parliamentary Seminar. The report will also contain recommendations on how to improve care by establishing an NHS Scotland commissioned specialist service for Alpha-1 that delivers coordinated, multidisciplinary care, based on national standards.

The seminar will provide a platform for politicians, patients, clinicians and NHS Scotland officials to discuss the findings and recommendations of the report. The meeting will be a panel discussion, chaired by Aileen McLeod MSP, Parliamentary Health Liaison Officer to the Cabinet Secretary for Health and Wellbeing, Alex Neil MSP, and Member of the Health and Sport Select Committee. Panellists will also include the Alpha-1 Alliance’s Chair, Karen North, and Chair Scotland, Professor William MacNee. The Alliance is currently confirming further speakers for the event.

Professor William MacNee, Chair Scotland of the Alliance, said: “For the first time, the Scottish Alpha-1 community is making their voice heard in Parliament. This event marks an important milestone in the campaign for a national Alpha-1 service in Scotland, and it is imperative that as many patients as possible attend.”

The details for the meeting are:

Wednesday 19th November, 6-8pm
The Fleming Room
The Scottish Parliament
Edinburgh EH99 1SP

It is important for the success of our campaign that the event is well attended. To support, the Scottish campaign, you should:

  • Attend the event.

  • Bring a family member or carer along (restricted to 1 guest per patient).

  • Invite your MSP by following the instructions on the Alpha-1 Alliance website – just click on

    3 Easy Steps to email your MP/MSP” or on the “Get Involved” tab.

  • Invite your consultant physician to attend the event and to RSVP in advance to

To attend the Parliamentary Seminar, you must register your/your guest’s name by emailing no later than 11th November 2014. Please also let us know if you have any specific access requirements or if you require personal assistance in the event of an evacuation.

Your support counts! We look forward to hearing from you.

Source: Alpha-1 Alliance 29/09/2014