NOTICE IS HEREBY GIVEN to members that the Annual General Meeting (AGM) of Genetic Alliance UK for 2018 will be held as follows:
Venue: Amnesty International UK, 25 New Inn Yard, London EC2A 3EA
Date: 25 September 2018
Time: 13:00 – 14:00
The AGM will be held during the lunch break on the day of Genetic Alliance UK’s Annual Conference. Members can book their free tickets via Eventbrite:
Each member organisation is entitled to a single vote on each resolution and voting cards will be issued on the day. Voting on all resolutions will be by ‘show of hands’. Lapsed members will not be eligible to vote.
Article 3: The Charity’s objects (the objects) for benefit are:-
[the charity has the power to.-]
4.1 act as an umbrella group to voluntary organisations which are concerned with genetic and/or rare conditions.
Article 3 Members
3.3 Membership is open to individuals and patient organisations and not-for-profit groups, whether corporate or unincorporated, associated with genetic and/or rare conditions and interested in furthering the work of the Charity who.-
3.3.1 apply to the Charity in the form required by the Trustees; and
3.3.2 are approved by the Trustees.
Supporting Statement: We have learned from our membership survey that the strength gained from being part of our wider community is the main reason organisations choose to join Genetic Alliance UK. There are over 6,000 known rare conditions. Research has shown that the majority of rare diseases have an underlying genetic cause or component (current estimates are around 80%). The cause of the remainder is a subject of research, and, in some cases, clear genetic links are being identified. Almost all single gene disorders are rare, and 99% of our members support people with and/or research into rare conditions. This close relationship between rare and genetic conditions is reflected at the level of policy development. It is vitally important that we continue to include those affected by undiagnosed genetic conditions in our work and our community pending diagnosis through clinical services or research. It makes sense that we ensure our work is transparently inclusive of all concerned with genetic, rare and undiagnosed conditions by reflecting the interconnectedness of the work we do in our governing document.
By order of the Trustees
Christopher Goard, Chair of the Trustee Board