A photo of Findacure's Trustees in 2015: Tony Hall, Vice Chair, Julie Walters, Former Trustee, Nick Sireau, Chair of Trustees, and Flóra Raffia, Former CEO

Applications are open for cohort two of Recruiting a Rare Board!

Beacon has teamed up with Getting on Board to bring you an exciting new project, Recruiting a Rare Board!

Having a strong and diverse board of trustees is so important for any patient organisation but it’s common for many rare disease patient groups to have a board made up of mostly friends, family and colleagues. Whilst this may make sense initially, in the long-run it can result in a board that does not have the right skills to help the organisation develop and grow.

Recruiting a Rare Board is a trustee recruitment programme that will teach patient groups how to recruit and retain trustees, through a series of masterclasses, clinics and feedback sessions across a 6 month period.

What is the purpose of the Recruiting a Rare Board programme?


If you are running a small patient organisation you are almost certainly in need of more time, and more support. Your board should be your first port of call to secure this. They can act as a pool of willing volunteers, helping to find more people and time to support the growth of the organisation, or providing much needed expertise.

However, in most cases boards are formed from close associates of patient group founders. They want to help, but may have very limited time, or feel less knowledgeable about your cause. Furthermore, their knowledge, experience, and perspective may be similar to your own, making it harder to tackle the difficult decisions you need to make to help your group succeed.

Recruiting a Rare Board is a free programme designed by Beacon and Getting on Board – a charity specialising in trustee recruitment. It aims to help you recruit new board members in a professional manner, ideally leaving you with a group of interesting, skilled, and diverse people applying to help you deliver your patient group’s mission.

If you would like to add new experience to your board, recruit some specific skills to help you mission, or simply welcome new committed members to your team, then this is the project for you! 

Kathryn Sullivan

Programme Director, Getting on Board

The Getting on Board logo

Penny Wilson

CEO, Getting on Board

The programme

What will you get out of the programme?

The programme is designed to walk you through the process of trustee recruitment. It will help you assess the skills, experience, and knowledge on your current board, and to identify your blindspots. From there, our workshops will help you to develop your recruitment materials in a live setting, accessing the support of your peers and trainers. It will then be time to go live, and have that unusual experience of people applying to help you on your mission!

We have outlined the major stages of the programme below, but you can also check out our handy pre-recorded webinar below to see why Beacon CEO Rick Thompson, and Getting On Board’s Kathryn Sullivan are so excited about this new programme.

The eight steps to success!

  1. Working out what you need from your trustee board
  2. What should you include in your trustee advert
  3. Developing your recruitment pack
  4. Targeting your advertising
  5. Converting interest into applications
  6. Shortlisting and interviewing
  7. Actually getting people onto the board
  8. Induction: don’t fall at the final hurdle

NB: This webinar was recorded prior to Findacure becoming Beacon in February 2022

How will the programme work?

Recruiting a Rare Board is a 6 – 12 month programme for patient groups who are actively looking to recruit trustees within the next year.

There are spaces for 11 patient groups on the programme, which will begin in March 2022.

Training will take place within the first two months of the cohort. Participants will attend five virtual masterclasses hosted by Kathryn Sullivan, Programme Director at Getting on Board.  Each two-hour masterclass will cover a different stage of the trustee recruitment journey, as detailed below.

17th March 2022

Session one will kick off by considering how each organisation needs people with varying skills and experiences, which compliment the different stages of your journey and growth. We’ll be discussing what your current situation calls for, and you’ll have an opportunity to meet others involved in the programme.

24th March 2022

In session two, we will consider what barriers may prevent the widest possible range of people applying to become trustees or other significant volunteers. This discussion will help you to craft text which speaks to your cause and the contribution others can make to it, coupled with compiling a list of things to include as “further information” once you have grabbed their attention.

31st March 2022

Session three will cover avoiding the “tap on the shoulder” approach to recruitment to maximise your reach and network. You will develop an individualised plan based on your existing networks and an understanding of how to approach them.

21st April 2022

After you have attracted a larger pool of applicants, you need to be able to decide between them. Session four is a practical one, giving you a template to produce a written plan of who and how you will shortlist and interview.

28th April 2022

Our final session will ensure all your hard work pays off. By covering the induction process before you appoint, you stand the greatest chance of your new trustees having a good experience and therefore making the biggest impact.

Our final session will ensure all your hard work pays off. By covering the induction process before you appoint, you stand the greatest chance of your new trustees having a good experience and therefore making the biggest impact.

How do we know that the programme works?

Just read what Clare, Treasurer of the Board of Trustees at The CSF Leak Association, had to say about her experience participating in the Recruiting a Rare Board programme!

The programme was excellent and it made me appreciate just how much work and planning needs to be done to recruit a good trustee. I started the programme with very low expectations of who we would be able to attract onto our board of trustees or a clear idea of who we were looking for. At the end of the programme whilst still preparing our recruitment campaign I decided to put in an ad in our newsletter for a trustee to help with IT in the way we were taught. We only had one response but he is absolutely brilliant. Your course enabled me to attract a high calibre person to the role and I’m sure he would not be working with us had it not been for the way the ad was written.

At the beginning of the ‘recruiting a rare board’ programme a lady responded to our website ad for a trustee. She is also proving to be an excellent trustee. The course made me realise we need more trustees than I had previously thought. I also realised we needed a better recruitment and induction process which I am still working on!

I am looking to recruit again from a wider pool than our community but first I want to ensure the trustees we have are established and concentrate my efforts to retain them.

Having never done anything in HR or social media before it was all new and confusing but it was well worth the time and effort.

You gave me the confidence to aim high and the skill to assess who we needed and how to attract the right person.

Who can apply?

Recruiting a Rare Board is open to UK rare disease patient groups, and is most suitable for trustees, founders, and CEO’s. A patient group should only apply to the programme once – regardless of the number of trustees they are looking to recruit – but may be represented by up to two members, and this is encouraged where possible. In this event, at least one of the members must remain consistent throughout the programme and be the primary point of contact with Beacon and Getting on Board.  

Given the limited space available on the programme, please read through and consider the following eligibility criteria before submitting an application. You should also make sure you are happy with the Terms of Participation, which can be found below. 

Eligibility criteria

  • You must be a UK-based rare disease patient group – though you may serve beneficiaries outside of the UK. 
  • You must be actively looking to recruit at least one trustee within six months of the cohort start date (17th March).
  • You must have approval from your trustee board or executive committee to take part in the programme – see our Permission form below.
  • You must be able to commit approximately 37.5 hours across the entire programme. This is inclusive of masterclasses, preparation, material creation, recruitment and induction. The exact time may vary according to how many trustees you are looking to recruit, and how many members you have working alongside you.  

Applications are open now. Unfortunately, we may not be able to guarantee everyone who applies a space on the programme.

If you are unsure about what you could achieve on the programme, are unclear if you are eligible, or have any other questions please contact projects@rarebeacon.org for an informal chat with our Projects Team. 

Mary Rose Roberts 

Head of Operations

Philippa Norman

Projects Coordinator

Hannah Harvey 

Projects Officer

How to apply

Before submitting your application, please make sure you read through the Terms of Participation below. 

If you are interested in being involved in Recruiting a Rare Board, please complete the form below. Applications must be submitted no later than 28th February.

You must also have approval from your trustee board or executive committee to take part in the programme. To confirm this, please have the senior member of your board (e.g. Chair of Trustees) complete our permission form below. If you are the Chair of Trustees, the form must be completed by a fellow trustee. If you are the sole individual of your organisation, you must complete the permission waiver at the end of the form.

The permission form needs to be completed and returned to projects@rarebeacon.org by midnight on Monday the 28th February 2022. 

We urge you not to miss this deadline as we expect to be oversubscribed for this programme, and not supplying the permission form may result in your application being ineligible.

You will hear back from Beacon regarding the outcome of your application by the 4th March 2022. 

With thanks to the funders of our empowerment programme