Dravet Syndrome Ireland (“DSI”) Terms of Associate Family and Caregiver Membership, 2025 (the “Terms”)

Applicants for associate membership will be required to complete a membership application. Upon acceptance, the term of membership shall be one calendar year and option for renewal of membership shall occur each year.

Family Membership

Family associate membership is open to residents of Ireland who have an immediate family member with a diagnosis of Dravet Syndrome or other rare genetic epilepsy. Primary applicants for each family must be aged 18 or over. Only one membership required per family.

Caregiver Membership

Our membership is also open to full time caregivers for people with rare genetic epilepsies. Applicants must be residents of Ireland and aged 18 years or over. Membership is open to both professional caregivers such as nursing staff and extended family members who may be caring for a child or adult in a full-time capacity.

The Directors of DSI may request such information from any person applying for membership as they consider reasonably necessary to determine their entitlement to membership such as a letter of confirmation of diagnosis from a Consultant Neurologist.

Associate members are entitled to benefits of membership including support with information resources, access to trial seizure monitor, access to events run by Dravet Syndrome Ireland and access to discounts on events and merchandise where available. Some benefits such as our Family Support Grant are open to a specific cohort of associate members, in the case of the Family Support Grant, parents or legal guardians.

Note: Associate members are members of the organisation ‘Dravet Syndrome Ireland’, rather than the company ‘Dravet Syndrome Ireland CLG’. This means associate members are not legal members of Dravet Syndrome Ireland and are therefore not subject to the legal obligations of full members of the company nor the voting rights associated therewith.

Applicants for associate membership must agree to support Dravet Syndrome Ireland’s mission as outlined in DSI’s website and strategy.

DSI reserves the right in its discretion to withdraw membership from associate members that do not adhere to these Terms and/or the ethos of the organisation in the reasonable opinion of the directors of DSI, or engages in any way in conduct deemed detrimental to the organization. Terminated associate memberships may be reinstated only at the discretion of the directors of DSI and upon satisfaction of any reasonable conditions they may impose.

An associate member may terminate their membership at any time by emailing info@dravetsyndromeireland.org

Associate members will be referred to as ‘members’ for the purposes of general communication.

The Directors of DSI reserve the right to amend, alter or add to these Terms. Notification of any such amendment, alteration or addition will be sent in writing to all members with 21 days’ notice.

To the maximum extent permitted by law, DSI, its officers, directors, or agents shall not be liable for any direct, indirect, incidental, consequential, special, or exemplary damages (including, but not limited to, damages for loss of profits, goodwill, data, or other intangible losses) arising out of or in connection with:

• Your associate membership or use of associate membership benefits, services, or resources.

• Any errors, omissions, or inaccuracies in the membership benefits or materials provided.

Your information will be used and stored by Dravet Syndrome Ireland in line with our Privacy Policy.

Dravet Syndrome Ireland will use the email provided by members to make contact regarding news and events.