News & Events

Connecting Communities: Genetic Alliance UK Annual Conference 2019

Last Reviewed 30/07/2019


15/10/19 09:00 - 15/10/19 18:00


Amnesty International
Human Rights Action Centre
25 New Inn Yard
London EC2A 3EA

Register here

Registration for Connecting Communities: Genetic Alliance UK Annual Conference 2019 is now open.

The theme of this year’s conference is “engagement” and the day will start with our keynote speaker Baroness Blackwood, the Minister responsible for rare diseases. The morning will consist of panel discussions with leaders and experts from media and journalism, and healthcare decision makers. There will also be several workshops in the afternoon, ranging from engaging with parliament to engaging with the pharmaceutical industry. This conference will be an excellent opportunity to network with a range of stakeholders, share and learn information with other patient organisations, and develop skills through practical workshops. There will also be a members’ soapbox event at the end, a platform for you to raise issues and highlight the work of your organisation. Please see below for a full draft agenda and click on the “Register here” button on the left to get your tickets.

Please note Genetic Alliance UK members are eligible for two free tickets. Spaces are limited.

Draft agenda

09:00 – Welcome and registration

10:00 – Opening from Dr Jayne Spink, Chief Executive, Genetic Alliance UK

10:10 – Keynote speaker: Baroness Blackwood, Under Secretary of State at the Department of Health and Social Care, and the Minister responsible for rare diseases

10:30 – ‘Engaging with the Media’ a panel session with Judith Bunting MEP, Fiona Fox, Director, Science Media Centre, and Simon Long-Price, Press and Media Manager, Genetic Alliance UK

11:05 – Access to Rare Disease Medicines campaign, this session will be an update from Nick Meade, Director of Policy, Genetic Alliance UK, on our ‘Resetting the Model’ project

11:35 – Break

11:55 – ‘Engaging with Decision Makers’ a panel session with Lizzie Thomas, Senior Public Involvement Adviser, Public Involvement Programme, National Institute for Health and Care Excellence (NICE) and representative from Medicines and Healthcare products Regulatory Agency (MHRA) (speaker TBC)

12:35 – Lunch and networking

13:25 – AGM (during lunch)

14:00 – Workshops (each workshop will last an hour and be run twice, so that attendees are able to join two sessions)

  1. Working with Decision Makers – featuring Lizzie Thomas
  2. People, Power and Parliament – featuring Parli Training
  3. Engaging with Social/Service Research & Clinical Research – featuring Kerry Leeson-Beevers, National Development Manager & Project Lead for Breaking Down Barriers, Alstrom Syndrome UK and Dan Lewi, Chief Executive, Cure & Action for Tay-Sachs (CATS) Foundation
  4. Engaging with Pharma – featuring Jill Pearcy, Director of ABPI Code Engagement, the Association of the British Pharmaceutical Industry (ABPI)

16:20 – Members’ soapbox

16:50 – Closing remarks from Dr Jayne Spink

17:00 – Drinks reception and networking

18:00 – Event closes

Members’ soapbox

We will be hosting a members’ soapbox session in the afternoon. This session will be a platform for our members to raise a topic and/or highlight the work of their organisation. You may use this opportunity to ask our team a question or give a short presentation on a topic. Because of time constraints you must register for a slot to participate in the session. There is a limited number of slots in the session, and each slot will be given a strict time limit. Only 10 slots are available (first come, first served), with a maximum of three minutes for each slot.

We recommend that if you have questions you would like our staff panel to answer during your slot, please submit them when registering. If you would like to use your slot to raise a topic or give a short presentation on a topic, please submit the topic when registering and we will get in touch with you about the presentation.

Staff panel:

– Dr Jayne Spink, Chief Executive
– Nick Meade, Director of Policy
– Dr Amy Hunter, Director of Research
– Jan Bochiński, Fundraising Manager
– Lauren Roberts, Director of Support

Travel expenses

We are working to secure funds to enable volunteer-led patient organisations, patients and carers to attend our annual conference. Keep an eye out for our newsletters to hear more.

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