We are looking for at least two independent senior volunteers on our Board, to bring fresh ideas and perspectives to what we do and make us as effective as possible as a team. 

Immunodeficiency UK is a small, impactful patient organisation and a registered charity, that supports individuals and families affected by a primary or secondary immunodeficiency in the UK.  

We are looking for experienced members of the public to join our Board of Trustees on a voluntary basis to help steer our growth over the coming years and who will ensure adequate governance oversight of our much-needed services.  

We are particularly keen to recruit people who have one or more of the following skills: 

  • Experience of living or caring for a person with an immunodeficiency 
  • Charity sector experience 
  • Organisational governance 
  • Risk management.  

Board meetings are currently held online every two months and take place on a Monday evening starting at 5pm for one to two hours.  

To find out more about joining our Board, please contact the Chief Executive Officer, Dr Susan Walsh, at hello@immunodeficiencyuk.org for an informal discussion. 

To apply for one of at least two roles, please write to the Chair of Trustees, Dr Matthew Buckland, c/o hello@immunodeficiencyuk.org with the subject line Trustee Application. Please attach a letter outlining your interest and connection to our cause and the skills/experience you would bring to the Board, along with your CV. 

Deadline for application: 12th June 2024. 

Interviews will be arranged with trustees during June/early July and announced in mid-July.   

An induction will be planned, and new trustees will be appointed from August. 

About Immunodeficiency UK 

Immunodeficiency UK, launched on the 1st April 2021, is a charity supporting individuals and families affected by a primary or secondary immunodeficiency in the UK. 

Our aims are to help ensure that those affected by primary and secondary immunodeficiency have the knowledge needed to manage their condition effectively and to ensure that their health needs are understood and addressed by those involved in policy and delivery of healthcare. The charity employs one full-time member of staff. The charity’s day-to-day operations are funded entirely by voluntary donations and grants.  

Immunodeficiency UK’s registered charity number is 1193166.  

Our annual reports are available on our website Our Charity – Immunodeficiency UK 

Role and Purpose 

In addition to providing general support for the charity the Board of Trustees have six main responsibilities: 

  1. To ensure the charity is carrying out its purposes for the public benefit  
  1. To comply with the charity’s governing document and the law 
  1. To act in the charity’s best interests 
  1. To manage the charity’s resources responsibly 
  1. To act with reasonable care and skill 
  1. To ensure the charity is accountable.  

Our history 

For the period from 2013 to 31st March 2021 we were known as Primary Immunodeficiency UK and managed as part of the charity Genetic Disorders UK. In April 2021, we separated with three founding Trustees and one employee who transferred (TUPE) to form Immunodeficiency UK. 

Details of the charity can be found at Charity overview, IMMUNODEFICIENCY UK – 1193166, Register of Charities – The Charity Commission 

Our mission 

Our mission is to support the advancement of health and the relief of people affected by primary and secondary immunodeficiency and their families and people responsible for their welfare, including: 

  1. By providing assistance, advice or guidance in relation to managing their condition and improving the diagnosis of these conditions, their treatment and the quality of life of those affected; 
  2. Promoting awareness and understanding of primary and secondary immunodeficiency within the general public and medical profession in order to better understand these conditions and their impact; and 
  3. Providing a helpline service, events and practical help and advice; 
  4. To encourage and support research into the causes, treatments, prevention and cures for primary and secondary immunodeficiency, and to publish the useful results of that research.  

Our values 

Our values in working for people affected by immunodeficiency are: 

Commitment – We are committed to caring for, supporting and helping people affected by immunodeficiency. 

Collaboration – We believe in working with others to achieve our aims. 

Achievement – We will excel in all that we do to best serve the needs of people affected by immunodeficiency. 

Respect – We value and respect the opinion of others and believe that people with immunodeficiency have a right to good healthcare without discrimination. 

Inclusiveness – We will be responsive to the needs of families affected by immunodeficiency wherever they live in the UK.