Volunteer Trustee with HR experience to join board of rare disease charity (Ring20 epilepsy)

What will you be doing?

The Board of Ring20 currently has 5 trustees: Chair, the Chair of the Scientific Advisory Board, Treasurer, patient representative, & a trustee with knowledge of epilepsy. Our founder/CEO is part volunteer/part paid. She attends all board meetings. We are currently seeking to add an additional trustee with an HR background who has an interest in rare diseases (epilepsy). The charity is dual purpose. We support >60% or reported cases of ring chromosome 20 syndrome [r(20)] across the globe; individuals and their families with this very rare genetic syndrome. Support includes a family conference for families and clinicians held every 2 years; regular ‘coffee chat’ sessions online; information posted online about the condition accessed by families and healthcare professionals; regular social media and newsletter updates; opportunities to connect with other families sharing similar challenges. Families are located in the UK, North America, Europe, Australia and other countries. Due to changes in diagnostic approaches, fewer people are being tested for r(20) and therefore numbers of new cases per year is declining, contrary to many genetic conditions. Our aim is therefore to promote research to encourage use of better diagnostics and finding new treatments as well as delivering family support. Our CEO has a wide network of interested parties: researchers, academics, clinicians, pharma companies, links with other epilepsy and rare disease charities in the UK and abroad. She is instrumental in setting up research opportunities. Our newly formed SAB (Scientific Advisory Board) will be proactive in recommending research opportunities and seeking funding. We currently have 2 research projects under way and opportunities for further study. Like all small charities, we are constantly looking for funding and resources to carry out the activities we aim to provide. We intend to recruit a new part-time member of staff to manage liaison with families. We also intend to implement a new CRM system to help us manage our contacts, boost fundraising through donations and provide impact data for our bid writer. Whilst we operate in the UK, we are aiming to encourage set up of non-profit organisations for r(20) in the US and Benelux and maybe other countries in future. We are very ambitious in seeking to find better diagnosis and treatment for those who suffer from Ring20.

What are we looking for?

Our new Trustee may have a link to someone with epilepsy or another rare disease, but this is not mandatory – an understanding, or willingness to learn allowing empathy with our beneficiaries would be helpful. They will have an HR background and be able to support the Board, CEO, staff and volunteers to ensure that the charity meets statutory requirements. Experience of a Trustee role for a small charity would be beneficial. They will help with recruitment, training, company policies, staff handbook and other HR related activities. They must be prepared to get involved in some operational activities, as we have very few people. They must also attend meetings regularly and be a team player.

What difference will you make?

Ring20 currently has a part-time paid CEO. We intend to recruit a part-time family liaison officer under contract for 1 year with potential to extend for a further2 years as soon as possible. We have a number of volunteers who work with the CEO (ad hoc) to deliver a range of activities. We have reviewed our policies recently but would value input to ensure they are suitable and up to date. We also need to develop a volunteer/staff handbook and better manage training requirements. A Trustee with HR experience will make a great difference to the charity's ability to write bids and to manage volunteers and/or paid staff.   Our CEO used to undertake the Board secretarial duties, but she has recently stepped down from the Board. Consequently, the new Trustee will be asked to take up the Company Secretarial role. As the Board meets quarterly, it will not be an onerous task. It will involve setting up online Board meetings, an annual in-person Trustee strategy day, sending out documentation relating to Board activities (agenda, minutes, actions and follow-up); working with the Chair, Treasurer and CEO to produce the annual accounts and report. The impact of this role will be hugely beneficial to the charity.