About Us

Alpha-1 Awareness is a charity formed to provide information and support to sufferers of alpha-1 antitrypsin deficiency. We maintain close links with experts and organisations associated with the condition. Our primary objective is to improve the understanding of Alpha-1 in both patients and medical professionals, as well as to provide support for Alphas, their carers and families.

We were the first Alpha-1 support group to get registered with the Charity Commission for England and Wales (1125467) in 2008 and also the first for full registration at the Office of the Scottish Charity Regulator (SC041100) in 2009.  On the 7th July 2018 we held a very special Celebration Day with Alpha-1 specialists doing talks for our members.  You can read about it and see photos here.

Our website provides extensive information about the condition, how it might be detected and discussion of the treatments and therapies currently available. We also offer links to more detailed information about alpha-1 antitrypsin deficiency.

If you would like to send a donation to us, please visit our donation page.

Objectives

  • To improve the understanding of alpha-1 antitrypsin deficiency (AATD)
  • To publicise AATD to medical professionals
  • To work with medical and patient organisations to raise awareness of the condition
  • To build a national network of patients
  • To become a pressure group to increase research and the availability of successful treatments
  • To develop a platform for patient support.

The Charity Board

    • Alan Wooler
      Chairman, Treasurer, IT Administrator, Trustee
      .
    • Amanda Stimpson
      Events Coordinator, Board Member
      .
    • Cori Ruktanonchai
      Secretary, Data Protection Officer, Trustee
      .
    • Emma Wooler
      Parent Support, Trustee
      .
    • Glyn Cockaday
      Facebook Administrator, Trustee
      .
    • Graham Dalton
      Scottish Representative, Board Member
      .
    • Helen Shaw
      Facebook Support, Board Member
      .
    • Pauline Laybourne MBE
      Public Liaisons, Board Member

 

Patrons

  • Professor David Lomas
    Dean of Medical Sciences, University College London
    Honorary Consultant Physician at Addenbrooke’s and Papworth Hospitals.
    .
  • Professor Sabina Janciaskiene
    Hanover Medical School

 

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