Rare disease UK eNewsletter

Dear Alan,
Today's newsletter includes:

Rare Disease Day Events

Parliamentary receptions

NIHR RD-TRC events

National Institute for Health Research’s Rare Disease Translational Research Collaboration (NIHR RD-TRC) are holding events at their hospital locations across the UK on the 29 February. Locations include Addenbrooke's Hospital in Cambridge and the Royal Brompton Hospital in London. Click here for more information and further locations.

For information about all the Rare Disease Day events in the UK (and worldwide) please visit rarediseaseday.org

Rare Disease Day Video

In case you missed it, last week saw the release of the official Rare Disease Day video, which you can watch here.

EUPATI launch toolbox to help patients get involved in medicines development

EUPATI is the European Patients’ Academy on Therapeutic Innovation. Working across Europe, they aim to educate patients and the public about the research and development of medicines. They have been working on a toolbox to help in this work, which was launched on Wednesday 27 January.

Genetic Alliance UK's Senior Research Manager, Amy, has written a blog about the toolbox and other ongoing work that EUPATI is undertaking. Read her blog here.

The British Medical Journal are looking for patient reviewers

The British Medical Journal (BMJ) is promoting the involvement of patients and their carers in setting the research agenda and in the design and conduct of research. As part of this work, they’re asking patients and carers to comment directly on the research papers that are submitted to the BMJ.

No expertise in scientific peer review is needed – it’s the experience and insights that develop from living with a condition and caring for and advocating on behalf of people that counts.

Reviewers will receive free membership to the BMJ as a thank you for taking part.

Full guidance on what the BMJ are seeking is given here.

Save the date: Genome Seq Week

When: Monday 7 March to Friday 11 March 2016
The engagement team at Genetic Alliance UK have been working hard to organise this year's Genome Seq Week and have now announced some of the events that will be taking place during the week starting on the 7th March. The events will explore how genome sequencing can be best used in a healthcare setting.

Click here to see what we'll be up to.

Care Quality Commission (CQC) Consultation

The CQC is consulting on its strategy for the next five years (2016-2021). The consultation document can be found here. Together for Short Lives has asked its members for input on the document in three areas:
  • How should the regulatory system for health and social care in England make sure that children with life-shortening conditions - and their families - receive high quality care?
  • How can CQC make sure that children’s palliative care services are regulated fairly and proportionately, in a way which reflects the distinct nature of what our sector does?
  • Will the CQC’s new proposals bring about the right regulatory system for the children’s palliative care sector?
Please let us know if you have any input on these points specific to your community and we will be happy to pass them along.

CQC are recruiting Experts by Experience

The Care Quality Commission is currently seeking to recruit people who have personal experience of using or caring for someone who uses health, mental health and/or social care services that are regulated by the CQC to be Experts by Experience.

Find out more about the role and process for applying here.

Join the Public and Patient Involvement Reference Group at NIHR

Deadline: Monday 29 February 2016.
NIHR are recruiting for three positions on their Evaluations, Trials and Studies Coordinating Centre PPI Reference Network. The reference group advises the coordination centre on the best ways to develop public involvement.

Click here and click on the tab “Reference Group Membership” for more details and how to apply.

Designing E-Learning for Health

Start date: Monday 15 February 2016

This course looks at how to design health related e-learning including translating real-life experiences into effective e-learning and methodology for designing online courses.

Future Learn courses are free, online and accredited. Find out more here.

RE(ACT) congress 2016

When: From Wednesday 9 to Saturday 12 March 2016
Where: The Crowne Plaza Barcelona – Fira Center in Barcelona, Spain

RE(ACT) congress 2016 is an international congress on research of rare and orphan diseases. It was initiated in 2012 by the BLACKSWAN Foundation as a vehicle to scientific cooperation on rare and orphan disease.
Find out more and register to attend here.

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