Events


May
31
to Jun 18

Rare Project Exhibition Theatr Clwyd

The Same but Different organisation uses the arts to raise awareness of disability and counteract prejudice.  It encourages people to look beyond first impressions and provides signposting to support organisations.   Through the Rare Project we shine the light on rare diseases and its impact on children.

The Rare Project exhibition will give you the opportunity to see the images and learn more about the people behind the conditions.

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Mar
7
to Mar 8

UK Dutch Genetics Conference

A mini exhibition of the Rare Project will be on display at the UK-Dutch Joint Clinical Genetics and Cancer Genetics conference is held in Cardiff, South Wales, UK on 7-8 March 2016. It has an excellent scientific programme delivered by world class experts.

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Mar
2
to Mar 4

Rare Project Exhibition - Heath Hospital, Cardiff

The Rare Project has been created by Same but Different.  We use the arts to raise awareness of disability and counteract prejudice.  In this photography exhibition we are highlighting the people behind rare conditions and introducing you to the people behind the conditions.

There will be an opportunity to see the Rare Project exhibition in the Concourse at the Heath Hospital, Cardiff which is in the shopping and refreshments area by the main reception.

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Feb
29
1:30pm 1:30pm

Rare Disease Day meeting - report on progress with Implementation Plan for Rare Diseases

Rare Disease Day meeting - report on progress with Implementation Plan for Rare Diseases


When: 1.30pm to 4.30pm, Monday 29 February 2016
Where: All Nations Centre, Sachville Avenue, Cardif  F14 3NY

The Welsh Government is holding an event on rare disease day at the All Nations Centre in Cardiff. Topics of discussion will include the implementation group and priorities for 2016/17, empowering those affected by rare diseases, identifying and preventing rare diseases, diagnosis and early intervention, care coordination and research.

Same but Different will also have an exhibition of the Rare Project at this event.

Further details and how to sign up can be found here.

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Celebrate Rare Disease Week at Chester Zoo 26 Feb - 4 March
Feb
26
to Feb 29

Celebrate Rare Disease Week at Chester Zoo 26 Feb - 4 March

To celebrate Rare Disease week Same but Different and Climb are working together to raise awareness of the people behind rare diseases.  This unique exhibition will allow you to take a visual journey into this world.

The exhibition will be on view in the Joseph Banks Room, Chester Zoo, Upton-By-Chester, Chester CH2 1LH.

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Feb
23
6:00pm 6:00pm

Welsh Assembly, Cardiff

To mark international Rare Disease Day, Rare Disease UK will be hosting Parliamentary Receptions across the UK.

Our reception in Wales, hosted by Darren Millar AM the Shadow Minister for Health and Social Services, will be taking place in the Welsh Assembly (The Senedd) on Tuesday 23rd February between 6pm and 8pm.

Speakers include:

  • Alastair Kent OBE, Chair of Rare Disease UK and Director of Genetic Alliance UK 

  • Dr Andrea Edwards, Clinical Director of the All Wales Medical Genetics Service

  • Ceri Hughes, Parent of Isaac who has the rare condition Moebius Syndrome

We will also have an exhibition with the work of one of our speakers, Ceri Hughes who runs 'The Rare Project'. 

Rare Disease Day provides the rare disease community across the world with the opportunity to increase awareness of rare diseases and highlight this public health priority to government and health departments. It is recognised in countries all around the world and 2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day.

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When

Tuesday, 23 February 2016 from 18:00 to 20:00 (GMT) - Add to Calendar

Where

National Assembly for Wales - The Senedd Cardiff, South Glamorgan CF99 1NA GB - View Map

To find out more about the event, or to register, please click here

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Oct
20
9:30am 9:30am

Rare Disease Patient Network Launch

Same but Different have been invited to exhibit some of the images from the Rare Project at this event and Ceridwen Hughes has been invited to speak.  You can find a full outline of the day and speakers below.  If you would like to attend please click on the following link. https://www.eventbrite.com/e/rare-disease-patient-network-launch-tickets-18627407076?mc_cid=7f348e986d&mc_eid=7dd6d7b2d5

The rare disease network has been formed to engage patients, families and patient organisation representatives in the work that Rare Disease UK is undertaking in Wales, in particular to support the implementation of the Welsh Rare Disease Plan that was published earlier this year. 

Within the day, they will be covering topics such as an introduction to clinical trials, new sequencing technologies and what they mean for patients with rare conditions and also hearing from patients and carers about their experiences of living with rare conditions.

Draft Programme

09.30– 10.00 Registration/ Tea & Coffee

10.00 – 10.10Welcome & Introduction
                        Emma Hughes, Development Officer for Wales
                        Genetic Alliance UK

10.10 – 10.30Engagement opportunities with Rare Disease UK
                        Farhana Ali, Public Affairs Manager
                        Rare Disease UK

10.30 – 10.50 The Welsh Implementation Plan for Rare Disease
                       
Chris Dawson, Policy Strategist
                        Welsh Government

10.50 – 11.20 Coffee Break & Networking

11.20 – 11.50 Genetic Syndromes and Developmental Delay
                       Professor Chris Oliver,
Director
                       Cerebra

11.50 – 12.10 Next Generation Sequencing and Rare Diseases: the Future
                       Dr Rachel Butler,Head of Laboratory
                       All Wales Medical Genetics Service

12.10 - 12.25Rare Disease Patient Registers and recruitment to clinical trials
                       Dr Cheney Drew, Trial Manager
                       South East Wales Trials Unit, Cardiff University

12.25 - 12.45 Patient and Public Involvement in the Health Technology Appraisal Process
                       Dr Claire Davis, Senior Appraisal Scientist & AWTTC Patient Organisation Lead

12.45 – 13.00 Telling Stories
                        Maggie Kirk,
Professor of Genetics Education
                        University of South Wales

13.00 – 14.00 Lunch & Networking

14.00 - 14.20 Living with a Rare Disease
                       Gillian Thomas, Trustee
                        Myeloma UK

14.00 - 14.15 The Role of Patient Organisations
                       Dr Becky Hardiman, CEO
                       Fragile X Society

14.15 – 14.30 The Rare Project
                       Ceridwen Hughes, Director
                       Same But Different CIC

15.00– 15.30 Conclusion and Networking

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