The National Lottery has awarded Haemochromatosis UK funding for a pioneering new 5 year programme, to advise and support communities at risk of iron overload from genetic haemochromatosis (GH) throughout England (#), across five key areas :

  1. Improving public awareness of the condition
  2. Stimulating family awareness of symptoms & helping families at risk to talk about GH
  3. Delivering cascade genetic screening for families at risk
  4. Providing genetic counselling & support for anyone diagnosed with genetic haemochromatosis, particularly in communities at increased risk of iron overload
  5. Improving care pathways to include wider provision and uptake of blood donation services

We are seeking volunteers to join the programme steering group, to help shape the programme and advise on its implementation over the years 2024-2029. Initially, Steering Group membership will be for one year, renewable annually thereafter.

We're looking for representation from all regions of England (#) from people of all ages and backgrounds, with lived experience of GH.  Steering group members will be consulted on their local GH priorities for screening, genetic counselling and care pathways as part of this England-wide initiative.

To get involved or to arrange a no-obligation discussion, register your interest!

Please note : there are no openings currently, but you can register an interest in participating as part of the 2025-26 group before 14th February 2025.

Register your interest in volunteering

(#) Please note that the funding for this programme has been specifically provided by the National Lottery for work across England. and so we are specifically seeking volunteers in England at this time. As a national charity, we are continuing to seek financial support to roll out this programme to Wales, Scotland & Northern Ireland.

What are the benefits of being a Steering Group Volunteer?

  • Get the chance to collaboratively help shape this major new initiative and help people affected by - or at risk of - GH
  • Be part of a team of volunteers and meet new people
  • Enjoy the satisfaction that comes from helping others 
  • Increase your confidence, communication and interpersonal skills
  • Develop new skills, useful in other areas of your life

What is the time commitment?

  • The steering group will meet quarterly for 60-90 minutes by Zoom.
  • We expect there will be some pre-meeting reading from time-to-time, which may require a further 30-60 minutes per quarter.
  • We anticipate that steering group members may meet once per year face-to-face for an all-day workshop. Travel expenses and accommodation will be provided.

What's involved?

  • Meet quarterly by Zoom with the charity's programme team to review and discuss proposed programme approaches and outlines
  • Share your local GH priorities for screening, genetic counselling and care pathways
  • Once per year, attend a face-to-face all-day workshop to develop specific programme ideas and oversee progress
  • Interact with others at risk of or affected by GH, including HUK members, members of the public, clinicians, elected representatives and other stakeholders
  • Honour the time commitments you make and to give reasonable notice if this is not possible.

What's NOT involved?

We do not expect the steering group volunteers to :

  • Undertake or initiate specific project delivery - this is an advisory role

What skills are useful in this role?

  • To be able to communicate effectively
  • The ability to work well in a team, to listen to others and be respectful of peoples' views even when they don't match your own
  • An interest in, knowledge of or willingness to learn about haemochromatosis.
  • Be confident meeting and speaking to new people.

What equipment is needed?

  • None

What support will you be given?

  • Volunteer induction and training
  • On-going support by an allocated person from Haemochromatosis UK
  • Opportunities to become involved in other Haemochromatosis UK activities including our quarterly volunteer virtual get-togethers