Below are just a few things you might be interested in from the rare disease community.
Keep an eye out for next week’s campaign update which will provide a full overview of everything we’ve been working on to ensure the UK Strategy for Rare Diseases is implemented in the UK.
PLEASE OFFER ME A SEAT
From Monday 12 September, Transport for London is trialling a new badge and card on all services to help customers who are less able to stand get a seat where they need one. They recognise that many customers, particularly disabled people and people with hidden conditions, struggle to get a seat when they need one. You can apply to take part or find out more about the scheme here.
TELL YOUR RARE DISEASE STORY
Are you interested in writing a blog about your experience of rare disease?
We’re looking for people who want to share their rare disease story. Whether you live with a condition yourself, or are a family member or carer for someone who does, we want to hear from you!
Click here to read our blog guidelines.
DON’T FORGET TO REGISTER FOR GENETIC ALLIANCE UK’S ANNUAL CONFERENCE!
Genetic Alliance UK’s annual conference is less than a month away. Genetic Alliance UK, our parent charity, wants to celebrate successful partnerships in the rare and genetic sector. It will be a great opportunity to hear from Deputy Chief Medical Officer, Dr Gina Radford, who holds the post of Champion of Rare Diseases in England.
You’ll also be able to hear from experts in the field including the Director of Specialised Commissioning at NHS England, Dr Jonathan Fielden.
Click here to register.
100,000 GENOMES PROJECT
Image result for genomics england
Last week Genomics England took over SWAN UK’s Twitter account to discuss eligibility for the 100,000 Genomes Project. Catch up on the conversation here.
HELP DEVELOP THE GENOMICS WELSH STRATEGY
WHEN: 20, 22 & 28 September
WHERE: Cardiff, Swansea and Bangor
The Genomics Taskforce in Wales has arranged a series of meetings to engage with interested parties across Wales as part of the development of a wider Strategy for Genomics and Precision Medicine. The three events will take place across Wales on 20, 22 and 28 September. Click here for more information.
NHS CHRISTMAS NUMBER ONE
On Friday evening, we were delighted to attend the NHS Choir’s celebration event for achieving the number one spot in the charts last Christmas. We are incredibly grateful to have been chosen as one of the recipients of the money raised by the sale of the single. You can read all about the choir here.
CONTACT A FAMILY CYMRU
DEADLINE: Friday 9 September
Contact a Family Cymru is currently conducting a survey to inform the planning of their services for 2017 and beyond. Take the survey here.
INTRODUCING OUR NEW PUBLIC AFFAIRS ASSISTANT
Our new Public Affairs Assistant started last week. Expect to see a new face at events in the near future, but for now you can get to know Rosie over on our blog.
THE FUTURE OF GENETICS IN MEDICINE
On 12 September, FutureLearn are starting a free online course looking at the potential of genetics in healthcare. This course is the first of three in the Genomics in Healthcare programme from St George’s, University of London. Click here to register.
IMPACT OF HAVING A RARE DISEASE ON THE BENEFITS PROCESS
DEADLINE: Friday 16 September
Don’t forget you’ve only got until the 16 September to submit your evidence about the Personal Independence Payment (PIP) process for the Department for Work and Pensions (DWP) second review.
If you have difficulties using a computer, evidence can be given orally but you’ll need to e-mail them to arrange this, or ask someone to do that on your behalf. For details and to respond, click here.
RARE DISEASE DATA IN SCOTLAND
As part of the work of the Rare Disease Oversight Implementation Group, a Short Life Working Group on Data has been established. The group will be mapping out where data sources for rare diseases already exist within National Services Scotland.
Genetic Alliance UK will seek to identify data sources currently being managed by patient organisations. If you would like to participate in this work, please contact Natalie, Development Officer for Scotland, .
GLOBAL ITP AWARENESS WEEK
WHEN: 26-30 September 2016
Immune thrombocytopenia (ITP) patients and support organisations around the world are raising awareness about the autoimmune bleed disorder in September. Follow the UK’s ITP Support Association on Twitter to find out how to get involved.
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 Public Affairs Assistant, Rosie.