Latest Events

Find out what upcoming events Genetic Alliance UK is involved in and what other upcoming external events you can get involved in. We have details of Genetic Alliance UK and Rare Disease UK events, External events and upcoming committees and focus groups.

Genetic Alliance UK 2013 events

Genetic Alliance UK 2013 Annual Conference and AGM

We will be holding the event at Charles Darwin House, 12 Roger Street, London, WC1N 2JU on Wednesday 10th July. The day promises to be exciting and interesting. It will encompass many areas of our current work as well as exploring the recent developments in the Rare Disease Plan and the new all-England congenital abnormalities register. You can view the full programme here.

If you would like to attend, please fill out the booking form on Eventbrite to register your details or fill out the booking form on our website and return it to us. You can specify any special dietary requirements on either form. Please confirm your attendance by Wednesday 3rd July. Attendance is free for members but for other attendees prices vary.

Members: Free but you will need to provide us with a £10 deposit cheque

Non-member patient organisations: £15

Researchers and clinicians: £25

Industry representatives: £80

For those registering on Eventbrite, please complete your registration on the site and then either send a cheque or BACS transfer to secure your booking for the conference. The details for a BACS transfer are here. If you have any questions about this, please contact Julian on .

This is a Genetics Society-sponsored meeting.

 

Know an extraordinary carer? Give them the recognition they deserve and nominate them for the Who Cares Award

Thank you for your nominations for the Who Cares Award. Nominations closed on 3rd May 2013.

A shortlist of nominations will be submitted to the judging panel, chaired by Andrew Holt, editor of the UK’s leading magazine for the sector, Charity Times. The winner will be announced at a special award lunch at The Little Ship Club, overlooking the River Thames in London, on 12 June 2013 to coincide with this year’s UK Carers Week (10-16 June 2013).

 

2012 Genetic Alliance UK and Rare Disease UK Events

Genetic Alliance UK annual conference and AGM 2012 - Conference materials now available!

Our conference and AGM was held on Monday 2nd July 2012. We were delighted that we had a full house for the day with many representatives of our members attending. The materials from the day, including speakers' presentations, are now available below. We released our Annual Review on the day giving on overview of our work of the past year. This is available to download here:

Genetic Alliance UK Annual Review 2011/2012 and the conference pack from the day ,which you can read speaker biographies in, is available here: conference pack

 

Route Maps for Rare Conditions

Jessica Burke presentation on the project

Cri du Chat route map presentation

Obliterative Bronchitis route map presentation

Vasculitis UK route map presentation

After the passing of the Health and Social Care Act, what is the Department of Health for? Dr Mark Bale

Dr Mark Bale's presentation

Lessons from familial cancer for all conditions on accessibility to services for Black and Ethnic Minority groups

Anna Allford, Professor Joe Kai and Professor Nadeem Qureshi presentation of their findings

Gene therapy: advances and expectation in the next 5 years. Professor Shirley Hodgson

Professor Shirley Hodgson's presentation

The year ahead for Genetic Alliance UK

Alastair Kent's presentation

 

Genetic Alliance UK Membership survey 2012

Thank you to all of you who completed the membership survey. Your feedback has been invaluable and we have started to implement it already. The next membership survey will take place in late 2013 or early 2014.

 

2011 Genetic Alliance UK and Rare Disease UK Events

Genetic Alliance UK AGM- 1st November 2011

We held our AGM on Tuesday 1st November. At the event we released our Annual Review of 2010/2011 and also launched the Facilitating Networks project.

Our speakers' presentations from the day are here:

What is the future for commissioned specialised services in the NHS?
Kate Caston
- Transitional programme lead for specialised services, NHS Commissioning Board Implementation, Department of Health (this presentation also includes information about the NHS reorganisation and the latest edition of the NHS Commissioning Board update so the file is quite large at 4mb and may take a while to download)

Changes to Public Health in the NHS, how will it work in the future?
Dr Mark Kroese
- UK Genetic Testing Network Public Health Advisor

The launch of Facilitating Networks

Buddug Cope - Genetic Alliance UK

Dr Ian Stuart - Cavernoma Alliance UK

Genetic Alliance UK's activities during the year

Alastair Kent - Genetic Alliance UK