Recruiting a rare board- round one update!

by | Dec 17, 2021

In case you didn’t hear, Findacure has teamed up with Getting on Board this year for the first round of an exciting new project, Recruiting a Rare Board!

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.

This is because 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.

Meet some of the groups in cohort one!

The first cohort of the programme took place from October to November 2021 and the participants took place in masterclass sessions that taught skills spanning the whole trustee recruitment process. From doing a skills audit to writing an advert and then inducting and onboarding new recruits.

We are really pleased to share the progress and recruitment adverts of some of the groups from cohort one below!

Could you be the ideal trustee for them?


Eosinophilic Diseases

The EOS Network exists to support the vision of a world in which everyone with an Eosinophilic Gastrointestinal Disease can eat without pain.

They work to provide information and support to patients, families and carers, provide a global platform for clinicians and researchers and provide educational resources to HCPs to enable them to better recognise and treat Eosinophilic Gastrointestinal Diseases.

What trustees are they recruiting?

EOS network are recruiting a treasurer to join their board.

They are looking for an individual who:

  • Enjoys financial planning and having financial oversight of an organisation?
  • Thrives in a small team, sharing their knowledge and using your skills to support others?
  • Has an average of 2 hours per week they could spare to apply those skills in a hands-on way to make a real difference to people across the world?

Could this be you?

Find out more about the opportunity and apply on the EOS Network website. 

Pitt-Hopkins Syndrome

Pitt Hopkins UK aims to raise awareness of Pitt-Hopkins Syndrome, particularly among the health professionals, to support and advocate for families while delivering the latest information about Pitt-Hopkins syndrome.

Who are they recruiting?

They are looking to recruit trustees for their board and an individual to fill the role of treasurer.

For the trustee role, they are looking for experience in:

  • IT
  • Marketing
  • Planning
  • Fundraising
  • Social media 

For the treasurer, they have specified that financial experience is not necessary but that some familiarity with basic book-keeping, producing budgets, and on-line banking would be helpful.

Deadline: 31/01/2022

Find their trustee advert here

Find their treasurer advert here 

Chronic granulomatous disorder

CGD Society aim to be the leading source of information and support for individuals and families affected by Chronic Granulomatous Disorder (CGD) in the UK and around the world.

What trustees are they recruiting?

CGD Society are recruiting up to five volunteer trustees to join their board.

They are looking for trustees to fill some specific skills gaps and in doing so
they are also particularly keen to diversify our Board in terms of age, race, gender and
religion. They are looking for individuals with experience in the following areas:

  • Legal
  • Fundraising
  • Governance secretary
  • Information Technology
  • Brand development
  • Digital Marketing
  • The healthcare profession

Deadline: 14/01/2022

Recruitment advert

Hereditary Spastic Paraplegia

The Hereditary Spastic Paraplegia Support Group helps people diagnosed with Hereditary Spastic Paraplegia (HSP). Today they have nearly 400 members, but are always trying to reach more people affected by the condition.

What trustees are they recruiting?

They are seeking at least 2 new trustees to sit on their board for at least three years.

They are looking for individuals who:

  • Are kind, honest, diplomatic, considerate and engaging
  • Enjoy developing ideas and concepts to help the group
  • Take ownership of responsibilities and fulfill them

You can find their trustee advert here. 

Getting on board

Getting on Board is a charity which supports people from all sectors of society to become charity board trustees,
and charities to recruit and retain a diverse range of trustees.

If you are interested in finding out more about recruiting your own trustees you can check out their website or their free resources for charities.