newsletter includes:
Caldicott: data sharing in the NHS and social care
Findacure launch their peer mentoring programme
Could you take part in IMAGINE ID?
Findacure workshop: Introduction to Rare Disease Patient Registries
Support for those affected by Mcap
The ARCHIE Study: The early use of antibiotics for ‘at risk’ children with influenza
Sign up to BioNews
Sign up to attend the Genetic Alliance UK Annual Conference
Update from Wales
Caldicott: data sharing in the NHS and social care
Last week the National Data Guardian for Health and Care released a review of data security, consent and opt-outs (known as the Caldicott Review). Genetic Alliance UK’s Policy Officer, Louise, has read through the review and explains the recommendations, what this means for our community and next steps in getting the consent model right on her blog.
Findacure launch their peer mentoring programme
Are you looking to set up or grow an advocacy group for your rare disease? Or are you a senior rare disease professional looking to share your experience and skills?
The peer mentoring programme is a unique opportunity for rare disease advocates to access expertise tailored to their individual group needs, and for mentors to develop their management and leadership qualities.
The year-long programme aims to support rare disease advocates in building the capacity of their patient organisations, in order to improve their patient support services and/or increase their involvement in research into their overlooked conditions.
Find out more about the project and how to apply here.
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.
Findacure workshop: Introduction to Rare Disease Patient Registries
When: 2 to 5.30pm, Friday 16 September 2016
Where: London
The day will introduce what patient registries are and how they can beneficially 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.
Support for those affected by Mcap
As part of Genetic Alliance UK’s Helping Patients project they are supporting a group hoping to provide online support to families affected by megalencephaly-capillary malformation syndrome, known as Mcap. Please share the Facebook page that they have started with the hope of finding more patients, families and carers affected by this condition.
What is Mcap?
Mcap is a syndrome characterised by overgrowth of several tissues in the body. Its primary features are a large brain and abnormalities of small blood vessels in the skin called capillaries.
The ARCHIE Study: The early use of antibiotics for ‘at risk’ children with influenza
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
Sign up to BioNews
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Their aim is to ensure that people like you are better informed about what genomic medicine and assisted conception can offer, and so that you can have access to appropriate medical treatment.
The BioNews email is free and is a quick and easy way to keep up to date. To subscribe to BioNews click here.
Sign up to attend the Genetic Alliance UK Annual Conference
When: Tuesday 27 September 2016
Where: Amnesty International UK, 17-25 New Inn Yard, London, EC2A 3EA
Speakers include:
Dr Jonathan Fielden, Director of Specialised Commissioning and Deputy National Medical Director.
Dr Gina Radford, Deputy Chief Medical Officer,
Jan Mather, Chair, Behçet’s Patients Centres
If you are a member of Genetic Alliance UK, the conference will be free to attend, but you do need to register on Eventbrite. The conference is also open to non-members, researchers, clinicians and industry representatives.
If you have any questions about the annual conference, please contact Mariana Campos.
Sign up to attend here.
Update from Wales
Rare Disease Implementation Group (RDIG) Wales
Genetic Alliance UK’s Development Officer in Wales, Emma, recently attended a RDIG meeting. At the meeting four out of the seven Local Health Boards presented on the progress towards implementation of the UK Strategy for Rare Diseases in Wales.
At the meeting, members were informed that the Welsh Rare Disease Plan is due to be refreshed to ensure it remains relevant and takes into account developments in the rare disease field since its publication in February 2015. A draft version will be presented at the next RDIG meeting in September.
The Welsh Government will also be producing a report –outlining the progress that has taken place in implementing the Strategy over the last year; this is due for publication in the Autumn.
Welsh Government Genomics Taskforce
Following the Statement of Intent, published by the previous Health Minister, Mark Drakeford AM in March 2016, the Welsh Genomics Taskforce has been re-established with a wider membership to develop a Welsh Strategy on Genomics and Precision Medicine.
Genetic Alliance UK has been invited to join the group to lead on Patient and Public Involvement (PPI).
Over the next few months, the Taskforce will be engaging with stakeholders from across the field to support the development of the Welsh Strategy on Genomics and Precision Medicine which will outline how genomics and precision medicine will be delivered in Wales to provide the greatest benefit to patients and their families.
For more information about this work and if you wish to be involved in the engagement work moving forward, please get in touch with Genetic Alliance UK’s, Development Officer for Wales, Emma.