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Applications are open for Recruiting a Rare Board!

Findacure 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 Findacure 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.

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)

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! 

Penny Wilson

CEO, Getting on Board

Kathryn Sullivan

Programme Director, Getting on Board

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 Findacure 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

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 20 patient groups on the programme, who will be split into groups of 10 across two cohorts. The first cohort will begin in October 2021, and the second in March 2022. Applications are open now for both cohorts and – depending on numbers – we will open recruitment again in early 2022 to fill any remaining spaces in the second round. 

Training will take place within the first two months of each 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. 

Cohort #1: 5th October 2021 / Cohort #2: 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.

Cohort #1: 19th October 2021 / Cohort #2: 31th 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.

Cohort #1: 12th October 2021 / Cohort #2: 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. 

Cohort #1: 2nd November 2021 / Cohort #2: 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.

Cohort #1: 9th November 2021 / Cohort #2: 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.

Following the masterclasses, patient groups will be tasked with putting their learning into practice. We will hold a series of drop-in clinics alongside this to provide feedback on groups’ adverts, recruitment packs, interview plans, and other areas stemming from the training sessions. Once the cohort is ready to begin recruitment – alongside groups’ own promotion – Findacure and Getting on Board will also advertise the positions within their own respective networks – making sure you get maximum exposure for your cause!

But it doesn’t end there – once trustees are recruited, we’ll be providing an additional induction session to introduce them to the world of rare diseases and all its complexities. What could be better? 

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 Findacure 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 (either 5th October or 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 for both start dates. In the first cohort we will prioritise groups with existing trustee boards or executive committees, as well as groups looking to start recruitment before the end of 2021. As we expect to be oversubscribed for this programme, we encourage you to submit an application for both cohorts in this opening round. 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 [email protected] for an informal chat with our Projects Team. 

Mary Rose Roberts

Head of Operations

Philippa Norman

Projects Coordinator

Hannah Harvey

Projects Administrator

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 midnight on Sunday 19th September. 

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 [email protected] by midnight on Sunday 19th September.

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 Findacure regarding the outcome of your application by Friday 24th September. 


With thanks to the funders of our Empowerment Programme