ALPHA-1 UK SUPPORT GROUP

Registered charity 1146330 · accounts filings on the Charity Commission register · also known as Alpha-1 UK · also registered in Scotland as SC043177 (OSCR)

We provide a support group and website focusing on news, events, information and how better to cope with Alpha-1 aiming towards improving quality of life. Organise social gatherings to educate and unite the Alpha-1 community. Produce, publish and distribute information booklets to advance understanding and awareness. Support research and campaign for better access to treatment.

Objects

(1) TO RELIEVE THE NEEDS OF INDIVIDUALS SUFFERING FROM THE GENETIC CONDITION ALPHA-1 ANTITRYPSIN DEFICIENCY (AATD), THEIR FAMILIES, CARERS AND FRIENDS, IN PARTICULAR, BUT NOT EXCLUSIVELY BY:A) PROVIDING ADVICE, SUPPORT AND EQUIPMENT WITH A VIEW TO IMPROVE THE QUALITY OF LIFE OF THOSE SUFFERING WITH AATD, THEIR FAMILIES, CARERS AND FRIENDS;B) ADVANCING AWARENESS AND KNOWLEDGE OF AATD, IN PARTICULAR AMONG AFFECTED PATIENTS AND MEDICAL PROFESSIONS AND HEALTHCARE PROVIDER ORGANISATIONS;C) FOSTERING IMPROVEMENTS IN ACCESS AND EQUALITY OF ACCESS TO CLINICAL EXPERTISE AND OPTIMAL DISEASE MANAGEMENT AND TREATMENTS FOR AATD;D) SUPPORTING INITIATIVES AIMED AT DEVELOPMENT, INTRODUCTION AND WIDESPREAD ADOPTION OF NOVEL THERAPIES FOR AATD, INCLUDING RESEARCH.E) WORKING COLLABORATIVELY WITH OUR MEMBERS AND RELEVANT EXTERNAL INDIVIDUALS, GROUPS OF INDIVIDUALS, ORGANISATIONS AND INSTITUTIONS IN ORDER TO ACHIEVE A) - D).

Area of benefit: UNDEFINED, IN PRINCIPLE NATIONAL

The charity’s charitable objects and area of benefit, quoted from its governing document as held on the Charity Commission register.

Causes: Education/training · The Advancement Of Health Or Saving Of Lives · website · Get email alerts

We have not yet analysed this charity’s accounts. Register data shown below.

Policies the charity declares

In its annual return the charity told the Commission that it has the policies listed below. This is self-declared: it is not verified by the Commission or by this site, and it is not evidence of how a policy works in practice.

• Complaints policy and procedures
• Engaging external speakers at charity events policy and procedures
• Internal charity financial controls policy and procedures
• Investing charity funds policy and procedures
• Safeguarding policy and procedures
• Social media policy and procedures
• Trustee conflicts of interest policy and procedures
• Trustee expenses policy and procedures

Trustees · trustee networks

• MISS KAREN O'HARAchair
• DR SANDRA NESTLER-PARR
• Samantha Sharp
• Tanya Jones · trustee of 1 other charity

Trustee list from the Charity Commission register (current, not historical).

Operates in: Scotland · Throughout England And Wales

Income and spending