Trustee - Board Member
Newly formed in 2020, we are a non-profit organisation that aims to support and educate families, carers and professionals who work with people diagnosed with Nicolaides-Baraitser Syndrome. NCBRS is an ultra “RARE” condition only recognised in 2012 and with fewer than 250 people diagnosed worldwide. Characteristics of NCBRS include intellectual disability, developmental delay and epilepsy.
Whether you have previous trustee experience or want to take the first step into a trustee position, we would love your help to progress our “RARE” community and shape the future of the NCBRS Worldwide Foundation. We welcome applications from all backgrounds and on an international level.
Experience in any of the following is preferable to help the Foundation to fulfil its vision/mission. If you have any additional experience that is not listed but think you can make a difference, then we would really like to hear from you as well.
- Grants & Applications
- Marketing & Branding
- Charity governance
- Fundraising & Funding
- Medical research
Requirements of the Role
- Attend each quarterly trustees board meeting
- Assist in the planning of the Foundation’s activities/events
- Assist in the Foundation’s fundraising activities
- Assist at any in-person/online events where required
- Answer/respond to other trustees/board members & partner organisations' emails (own email address will be provided)
- To read the Charity Commission's guidance on Charity trustee: what’s involved.
- To read the Charity Commission's guidance on Automatic Disqualification and this does not apply to me.
- To be a trustee for a term of three years (after which you can be re-appointed if you desire for a further three years)
- To provide your details to the England & Wales Charity Commission
Skills and Attributes
- Ideas to progress the Foundation
- Good communication skills
- Fluency in English would be preferable (as we mainly communicate in English throughout the world)
- Willingness to champion the Foundation’s activities
Our trustee board meetings take place online four times a year (quarterly) using Zoom. These are usually held at 12 PM (UK time) - 7 AM (US & Canada time), subject to change to fit in with time zones. All trustees report regularly to the rest of the board and works closely with our Co-Founder/CEO on a day-to-day and needs basis.
Are you up for the challenge? Then apply today... Deadline: 31st July 2022. We can’t wait for you to join the team.
“ALONE WE’RE RARE, TOGETHER WE ARE STRONG”