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WE’VE GOT A NEW LOOK…
But don’t worry, we’re still the same on the inside! We’ve got new branding, and a new website to match - we hope you like them as much as we do.
JOIN US AT OUR CONFERENCE!
Don’t miss our annual conference, the perfect opportunity to meet people from other patient organisations and celebrate some of our communities’ most successful partnerships. Find out more here.
NOMINATE A TRUSTEE
At our conference in September we’ll be electing five new trustees during our Annual General Meeting (AGM).
Our board of trustees is made up of representatives of our members; this is to make sure that we always work in the best interest of our members. If you would like to find out more about what it means to be a trustee or to nominate someone to be a trustee, please email us.
If you haven’t had enough of Brexit yet, you can read our summary of a recent oral evidence session of the Commons Science and Technology Committee. The Committee is taking evidence on the implications and opportunities for science and research of leaving the EU.
Friday 30 September 2016
The Neurological Alliance has launched its second neurological patient experience survey. The survey aims to collect information about the experiences of care received by people affected by neurological conditions to help them to understand how much progress has been made in improving neurological services.
Please click here to complete the survey.
RARE DISEASE SUMMIT
8.30am to 5pm, Tuesday 25 October 2016
Robinson College, Grange Road, Cambridge, CB3 9AN
The Cambridge Rare Disease Network is holding an international rare disease summit. For more details, and to register, click here.
12 to 6.30pm, Thursday 29 September 2016
Wellcome Trust (Jenner Room), London
This is a half day event run by a group of academics, for people with a personal or family interest in the work of the 100,000 Genomes Project. This will be an interactive day, exchanging views and ideas on the social and ethical aspects of participation in genome sequencing and identifying priorities for research.
LEARN ABOUT RARE DISEASE PATIENT REGISTRIES
2 to 5.30pm, Friday 16 September 2016
Findacure is holding a workshop looking at patient registries for rare diseases. The day will introduce what patient registries are and how they can support research development. Attendees will gain an improved understanding of registries and the different approaches patient groups can take to get involved in a registry for their own condition.
Sign up to attend here.
PEER MENTORING WITH FINDACURE
Findacure is also recruiting to their peer mentoring programme. If you are looking to set up or grow an advocacy group for your rare disease, or are a senior rare disease professional who could share their experience and skills you can find out more here.
Find out more about the project and how to apply here.
TUBEROUS SCLEROSIS EVENT
Saturday 27 August 2016
The Lighthouse, 11 Mitchell Lane, G1 3NU Glasgow
The Tuberous Sclerosis Association in Scotland is holding an event for anyone with an interest in the condition.
More details can be found here.
Prioritising Recruitment in Randomised Trials is a study looking aiming to collect information from people who are or have been involved directly in designing, conducting or taking part in randomised trials. The project has been designed with the aim of improving randomised trials.
Find out more about the project here.
NEW FUND TO HELP PATIENTS IN WALES
A new fund of £80m has been announced to help patients with life-limiting conditions in Wales access innovative and new medicines quickly.
There is also going to be a review of the Individual Patient Funding Request (IPFR) commissioning route, to evaluate decision making and to consider the eligibility criteria for patients applying to access medicines in this way.
For more information about this click here.
END OF LIFE CARE FOR CHILDREN
5pm Friday, 12 August 2016
The National Institute for Health and Care Excellence is consulting on the draft guidance for end of life care for infants, children and young people. For more information click here.
We’ve addressed the issue of health data, consent and security for rare disease patients in a blog for Special Needs Jungle.
You can read this here.
ELIGIBILITY FOR THE 100,000 GENOMES PROJECT
Genomics England has released an updated version of the eligibility criteria for patients with a rare disease hoping to take part in the 100,000 Genomes Project. This can be found here.
CARDIOMYOPATHY UK CONFERENCE
9am to 4.30pm, Saturday 12 November 2016
Royal National Hotel, 38-51 Bedford Way, London, WC1H 0DG
Cardiomyopathy UK is holding a national conference where there will be expert speakers, presentations, talks and discussions from people with cardiomyopathy who will be sharing their personal stories and experiences of living with cardiomyopathy. Click here for more information.
COULD YOU TAKE PART IN IMAGINE ID?
IMAGINE ID is a large study of children diagnosed with a genetic condition which affects his/her learning. The researchers are looking to collect information from over 5,000 families with children aged 4-18 with intellectual disability due to a genetic cause. They hope to learn more about the long-term behaviour and mental health of children and young people from this large group of families.
Families taking part complete an online questionnaire known as a DAWBA (Development And Well-Being Assessment). Once the DAWBA is completed, families will receive a personalised summary report detailing the child’s strengths and difficulties. This report has proven very useful for hundreds of families so far when applying to specialist services, education and treatments. More information about the study can be found here.
The ARCHIE Study
The ARCHIE study is an NIHR funded trial to determine whether treating children with ‘at risk’ conditions (conditions associated with a higher risk of developing flu-related complications) with antibiotics during the early stages of a flu-like illness reduces the likelihood of them becoming more unwell or developing flu-related complications, such as pneumonia. They’ll start recruiting again in the winter. For more information go to the Archie Study website
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If you would like us to publicise any of your activities to our membership, or have any other questions or comments about this newsletter, please contact our Policy & Communications Assistant, Beth.