Connecting Communities: Genetic Alliance UK Conference 2019

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Date and Time

Location

Location

Amnesty International

Human Rights Action Centre

25 New Inn Yard

London

EC2A 3EA

United Kingdom

Event description

Description

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 a topic and/or highlight the work of your organisation in a supportive environment.




Agenda

09:00 - Welcome and registration

10:00 - Opening session
Welcome from Dr Jayne Spink, Chief Executive, Genetic Alliance UK. 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 - Panel session: Engaging with the Media
Judith Bunting MEP, Fiona Fox, Director, Science Media Centre and Danny Buckland, Journalist, Times’ Raconteur.
Chaired by Simon Long-Price, Press and Media Manager, Genetic Alliance UK.

11:05 - Access to Rare Disease Medicines campaign
Update on our ‘Resetting the Model’ project, Nick Meade, Director of Policy, Genetic Alliance UK.

11:35 - Break

11:55 - Panel session: Engaging with Decision Makers
Lizzie Thomas, Senior Public Involvement Adviser, Public Involvement Programme, National Institute for Health and Care Excellence (NICE) and Mike Dykes, Engagement Manager, Medicines and Healthcare Products Regulatory Agency (MHRA).
Chaired by Nick Meade, Director of Policy, Genetic Alliance UK.

12:30 - Rare Film Festival announcement
Jan Bochiński, Fundraising Manager, Genetic Alliance UK.

12:35 - Lunch and networking

13:25 - Annual General Meeting (during lunch)
This is only for Genetic Alliance UK member organisations and staff.

14:00 - Workshops (each workshop will run twice)

– Working with Decision Makers: Lizzie Thomas, Senior Public Involvement Adviser, Public Involvement Programme, National Institute for Health and Care Excellence (NICE).
– People, Power and Parliament: Parliament Training.
– Engaging with Social/Service Research & Clinical Research: 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.
– Engaging with Industry: Jill Pearcy, Director of ABPI Code Engagement, the Association of the British Pharmaceutical Industry (ABPI) and Charlie Galvin, General Manager for UK and Ireland, Amicus Therapeutics.

16:20 - Closing session
Members’ soapbox, followed by closing remarks by Dr Jayne Spink.

17:00 - Reception and networking

18:00 - Event ends



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 (first come, first served), and each slot will be given a maximum of three minutes.

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

– Lauren Roberts, Director of Support

– Jan Bochiński, Fundraising Manager



Travel Sponsorship by the Galton Institute

We are delighted to announce that the Small Grants Committee at the Galton Institute has agreed to help fund the travel expenses for some volunteer-led patient organistions, patients and carers to attend our annual conference.

The available fund is limited and will be given on a first come, first serve basis. To assist as many organisation as possible we may limit the amount awarded to each organisation. If you are a small volunteer-led member organisation of Genetic Alliance UK and have registered to attend and would like to claim your travel expenses, please email our Membership Engagement Manager, Jurrat, at jurrat.hasan@geneticalliance.org.uk by Monday 7 October with the subject line, ‘Annual Conference Travel Claim’ and with the following details:

  • your name;

  • your ticket registration number;

  • which patient organisation you represent;

  • how you are travelling;

  • where you are travelling from (including planned route);

  • expected cost;

  • and if you have already purchased your travel ticket(s).

Date and Time

Location

Amnesty International

Human Rights Action Centre

25 New Inn Yard

London

EC2A 3EA

United Kingdom

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