Welcome to Genetic Alliance UK's monthly update. Every month we send you a round up of all the news from Genetic Alliance UK, including updates on our policy work.

News from Genetic Alliance UK

Your genetic data: would you share?

Deadline: 12 June 2016


What would you be less willing to share: your bank statements or your genetic data? What should happen to someone that misuses your genetic data?

These are just two of the questions we want patients and their families/carers to answer as part of a survey on genomic data. The survey results will help inform the way the 100,000 Genomes Project collects and shares the data it generates, and ultimately, help the NHS become one of the first health systems in the world to use whole genome information in mainstream clinical practice.

If you are a patient aged 18 or over, or a relative or carer of a patient, with a diagnosed or suspected rare genetic condition or cancer, we want to hear from you. The survey  will take approximately 20 minutes.

Get in contact if you have any questions before taking part, or during the survey, or call our Public Engagement Manager, Mariana Campos on  +44 (0)20 7704 3141.

Complete the survey

Our response to proposal to display medicines pricing on packaging

We’ve submitted a response to a consultation from the Department of Health and the Medicines and Healthcare products Regulatory Agency on amendments to regulations relating to the functioning of pharmacies. This includes the proposal recently made by the Secretary of State for Health that indicative prices would be put on all medicines dispensed by the NHS in England costing more than £20, as well as a statement about how the cost of the medicine is met such as, for example, ‘funded by the taxpayer’. Read our response here.

Developing a method to assist investment decisions in specialised commissioning

NHS England has just concluded a 30 day consultation on a method to prioritise which treatments and policies will be funded in specialised commissioning for the 2016/17 commissioning cycle. We mentioned this in a newsletter a few weeks ago. You can now read about our response to the consultation here.

Backbench MPs call for better support for those diagnosed through innovative genomic research projects

On Wednesday 4 May 2016, the All Party Parliamentary Group on Rare Genetic and Undiagnosed Conditions met to launch their new report ‘Undiagnosed genetic conditions and the impact of genome sequencing’. The report was launched by Ben Howlett MP, Chair of the APPG. Read our update from the event, and learn more about the report that was launched here.


SWAN UK member, Sarah Oakes, gave a speech at the most recent APPG meeting about her son Joel. You can read what she had to say on our blog.

Pledge for Patients

Thank you to everyone who got involved in our Pledge for Patients campaign in the run up to the elections. We are pleased to tell you that we received pledges from over 100 candidates, of these more than 40 have been elected across Scotland and Wales. We look forward to talking to all those who signed up, in the coming months, about how we can help them fulfil their pledges.

What did they pledge to do?

If you have questions about the Pledge for Patients campaign you can contact our staff in Scotland and Wales:

Wales – Emma Hughes
Scotland – Natalie Frankish

Save the Date: Genetic Alliance UK Annual Conference

When: 27 September 2016
Where: Amnesty International, 25 New Inn Yard, London EC2A 3EA

This year’s annual conference aims to celebrate your innovative and successful partnerships. We want to showcase the best examples of partnerships with the public, clinicians, media, and researchers from within our membership and to share and learn from your experiences. For now, do save the date on your diaries. We will be back in touch with more details soon.

What do patients think about the future of genome sequencing in cancer care?

During May our Public Engagement and Project Officer, Angela Wipperman, was featured on the Frontline Genomics website talking about our Patient Charter on cancer patient's views of genome sequencing.

Read the article here.

Events from our members coming up during June

Medical evidence: Be part of The Academy of Medical Sciences’ latest research project

The Academy of Medical Sciences is carrying out research to explore how we can all best use evidence to judge the benefits and risks of medicines.  A crucial part of this is hearing from patients, families and carers who have regular contact with the health service and are accustomed to talking with healthcare practitioners about the benefits and risks of medicine(s).

The results of the research will inform policy conversations and be vital for increasing wider understanding across the medical profession and academia of how patients view this important issue.

We are therefore inviting patients and family members in a caring role to take part in two workshops, run by the independent research agency Ipsos MORI.

9.45am to 4pm, Saturday 4 June 2016 at Doubletree Hilton Leeds, Granary Wharf, 2 Wharf Approach, Leeds LS1 4BR

6.15 to 9.30pm, Wednesday 8 June 2016 at Doubletree Hilton Leeds, Granary Wharf, 2 Wharf Approach, Leeds LS1 4BR

There will be regular breaks and refreshments at both events. Participants will be given £80 as a thank you for taking part in the first event and £60 for taking part in the second. Travel costs will also be reimbursed*.

If you would like to take part or simply want more information about the research please contact Naomi Boal from Ipsos Mori.

* Travel costs can include: taxis to and from the workshop, parking costs during the workshop, second class train fares, bus tickets and 40p/mile for petrol.

Battens disease education training day

When: 10am to 4pm, Friday 10 June 2016
Where: Linden Lodge School, Wimbledon Park, London, SW19 6JB

The Battens Disease Family Association is running an education training day at Linden Lodge school for professionals working with children and young people with a Batten disease diagnosis.

For more information contact Harriet Lunnemann or Barbara Cole by email, or call 07876712553

Turner syndrome awareness day

When: Tuesday 21 June 2016

Turner syndrome is a complex and common genetic disorder that affects 1:2000 live female births. The main characteristic features of TS relate to growth and development but other characteristics may be associated with the condition. Turner Syndrome Awareness Day aims to create a greater understanding of Turner syndrome.

Have a look at their awareness raising poster, and follow them on Twitter andFacebook.

Genetics and Genomics for the 3rd Generation’, or 3G, public conference

When: 10am to 2.30pm, Wednesday 22 June
Where: The Park Inn Cardiff City Centre

This event is primarily aimed at members of the public over 50, but anyone is welcome! There will be six short genetics-related talks including: poisons and medicines, DNA barcoding plants, ancestry and the DNA Cymru project, and forensic science.There will also be a number of interactive stands showing some of the research and projects taking place in Cardiff University and Wales Public Genetics Network. The event is free to attend but booking is required via Eventbrite.

'Gene discovery in epilepsy: the role of biobanks in patient research'

When: 6pm, Thursday 23 June 2016
Where: Institute of Life Science 1, Swansea University

Join the Wales Gene Park to explore gene discovery in epilepsy and the role biobanks can play in patient research. Talks from experts will follow the journey from patients in the clinic, to recruitment to a research biobank, looking after the DNA samples, and making genetic discoveries. There will also be time for discussion and questions with the experts in this field. This event is free but you must register to attend via Eventbrite.

Find a cure workshop

When: 2 to 5.30pm, Friday 24 June 2016
Where: 5 Old Broad Street, London, EC2N 1DW

As part of their training series for small rare disease patient groups, Findacure are hosting a workshop looking at how patient groups can work with researchers. The meeting will give groups the opportunity to learn about the benefits of working with researchers, the different ways that patient groups can support research and how to establish partnerships.

Register here.

Children’s Health Innovation Day

When: Saturday 25 June 2016
Where: Horizon, Leeds

The Yorkshire & Humber Academic Health Science Network and Technology Innovation Transforming Child Health are holding a Children's Health Innovation Day in June. The event will provide children and their parents with a unique opportunity to discuss the challenges that children and young people have with their self-care and independence, and managing their condition, with healthcare professionals, academics and designers.

Using creative workshops involving everything from pens and paper to model building, event attendees will be invited to design solutions that help improve self-care and independence for children with long term conditions.

For more information please visit their website.

Debate on genomic privacy in Cardiff

When: 5.30pm, Thursday 30 June 2016
Where: The Old Library, Yr Hen Lyfrgell, The Hayes, Cardiff, CF10 1BH

Genomic medicine is evolving quickly, and data is being collected from patients with rare diseases and cancers across the UK. This information needs to be collected and stored securely, interpreted by experts and viewed in a way that protects the donor’s identity. There have been discussions among scientists about the implications of genomic medicine for privacy and the NHS, and the British Science Association believes that it is vital to open that conversation up to the public.

Tenovuus are hosting a public debate on genomic privacy in Cardiff on 30th June at The Old Library, Yr Hen Lyfrgell, The Hayes, Cardiff, CF10 1BH: www.yrhenlyfrgell.wales/. Those attending are invited to meet at the café/bar inside the Old Library at 5.30pm then the debate will take place between 6.00 –7.30pm.

For more information, please contact Lisa Whittaker at Tenovus Cancer Care.

Look out for more events like this around the UK – as there are lots happening over the summer.

'The Angelina Jolie Effect: a public event to explore how breast cancer runs in families'

When: 5.30pm, Thursday 30 June 2016
Where: Catrin Finch Centre, Glyndwr University, Wrexham

Join the Wales Gene Park at this interactive event to explore the genetics of breast cancer and what it may mean for you. Clinicians and researchers will talk about current practice and findings and someone affected by inherited breast cancer will share their story and experiences. There will also be time for discussion and questions with the experts in this field. This event is free but you must register to attend via Eventbrite.

For further details of all these events please contact walesgenepark@cardiff.ac.uk or phone 02920 746940

Rare Disease Summit

When: 8.30am to 5pm, Tuesday 25 October 2016
Where: Robinson College, Grange Road, Cambridge, CB3 9AN

The Cambridge Rare Disease Network is holding an international rare disease summit looking at questions such as: What can Cambridge contribute to global efforts in rare disease research? Who’s leading the way in collaborative, innovative research, treatment and care for those with rare diseases? How can we put patients and their families at the centre of all discussions?

For more details, and to register, click here.

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