Trustee with compliance experience, trustee with marketing/social media experience

Dravet Syndrome Ireland is a registered charity that aims to raise awareness and help those living with rare genetic epilepsies in Ireland. We aim to support families of people living with Dravet Syndrome and other genetic epilepsies and improve the quality of life of those affected. Dravet Syndrome Ireland is a parent led, volunteer-run organisation. As a young organisation, founded in 2020, we are dynamic and passionate about what we do. 

At Dravet Syndrome Ireland we support families by organising in-person and virtual events, providing information resources, host parent support forum, liaise with pharmaceutical companies and other stakeholders in rare epilepsies and raise awareness. We recently ran a Family Day in collaboration with our colleagues at FutureNeuro, with families, researchers and clinicians in attendance for a day of talks and fun family activities. This was the first of its kind for our community and we are looking for new board members to help us continue to expand and allow our community to come together and share their lived experiences. We have plans to role out a family grant scheme. It is currently a very exciting time for our community with much research in Dravet Syndrome including genetic treatments. We liaise with pharmaceutical industry to share the concerns of our community and advocate for access to all evidence-based treatments.

We are seeking new board members to join our team at Dravet Syndrome Ireland.  We are looking for board members with experience in digital marketing and social media content and compliance to complement our team and help us grow the reach of our organisation across Ireland. We represent people with rare epilepsies in Ireland and are currently linked with over 50 families right across the island. However we know there are hundreds more families needing our support in raising awareness and providing support and we need a bigger and more experienced team to help us do this.

Charities Regulator’s General Duties of a Charity Trustee

• Comply with the Charity’s governing document
• Ensuring charity is complying with its charitable purpose for the public benefit
• Acting in the best interest of the charity
• Act with Reasonable Care and Skill
• Manage the assets of your charity

By being a trustee of Dravet Syndrome Ireland your responsibilities will include the following:

Providing input to the strategic direction of the organisation and contributing with insight, oversight, and experience at board meetings and any additional commitments

Policy development and implementation as required

Compliance with CRO and Charity Regulator requirements

Assisting with ongoing management of social media accounts

Assisting with Event management

We are currently looking for two new board members, experience in areas listed an advantage but will consider other experience and skills also.

Essential/Desired Skills/Qualities required for these roles:

• A deep appreciation and knowledge of the Not-For-Profit sector
• An understanding of and commitment to our mission and values
• Commitment to highest levels of corporate governance 
• Experience in compliance in charity sector
• Experience in digital marketing
• Experience in event management

Board Meetings:

There will be four board meetings and 2 sub-committee meetings a year. Meetings are held virtually for the most part, one in-person.