Welcome to your new-look Scottish TSA Newsletter. This aims to provide information specific to the TSC community in Scotland, and will be published twice a year, in the Spring and the Autumn. We hope you will like it and find it useful. Please remember to select ‘unsubscribe’ at the bottom of this email if you would not like to receive it any more.
The TSC community in Scotland has the opportunity to meet up on Saturday, August 27 at our annual Scottish Get Together 2016. This will take place at The Lighthouse in Glasgow. Consultant Clinical Geneticist at the TSC Clinic in Glasgow, Dr Shelagh Joss, will be attending as will Heather Noller, Policy and Parliamentary Officer, and, Maggie Farrell, Training and Policy Officer, from the Carers’ Trust in Scotland. All will be available to discuss any questions you may have about self-directed support, or carers issues. The day is an opportunity to catch up with old friends in the TSC community in Scotland, and make some new ones. More details and booking forms will be sent by mail to everyone on our mailing list very shortly.
Our annual UK-wide get together / conference will be held on Saturday, September 17, at the Belfry Hotel in Nottingham. The event is called TSA Big Day 2016 and we would love to see as many people as possible attend from the UK TSC community including adults and children with TSC, plus their loved ones and carers, medics and other professionals. TSA Big Day will offer opportunities to find out more about research that’s going on into the condition, the work of the TSA, progress on campaigns for better drug treatments, and, time to meet old friends and make some new ones. For more details and to book to attend please go HERE
Rare Disease Day 2016 – Reception at Holyrood
Scotland’s Rare Disease 2016 reception was held at the Scottish Parliament in Edinburgh on Tuesday March 1, hosted by the recently retired MSP Malcolm Chisholm, who warmly welcomed everyone to the event.
TSA Adviser for Scotland Lynn Shields represented the TSA at this event. 'It's Not Rare to Have a Rare Disease', describes how Scotland is currently contributing to the delivery of the UK Rare Disease Strategy and sets out areas for future partnership to deliver actions in:
• Empowering those affected by rare diseases
• Identifying and preventing rare diseases
• Diagnosis and early intervention
• Co-ordination of care
• The role of research in rare diseases.
You can read all about this HERE
Alastair Kent OBE, Chair Genetic Alliance UK, also attended the event at Holyrood and spoke of work that is taking place towards implementing the rare disease plan, while highlight how there is still much more to do.
Jamie Hepburn MSP, Minister for Sport, Health Improvement and Mental Health announced a £6m investment in the Scottish Genomes Partnership, and Professor Zosia Miedzybrodzka, Medical Geneticist, spoke about the Scottish Genomes Project and what it means for rare disease patients.
Launch on new patients’ charter for Scotland
Wednesday, March 23 saw the launch of the new patients’ charter for Scotland. One of the key findings of this document is that while there have been some improvements to patients’ experiences in Scotland, it is nevertheless not clear to what extent new process have improved patient access to medicines for rare conditions.
To this end the charter makes five key recommendations:
• There is a need for an increase in representation and type of patient voice on all decision-making panels
• Greater clarity as to the role of patient responses in Scottish Medicines Consortium decision-making is necessary
• The New Medicines Fund should be retained with increased transparency on its use
• Clarity on the process and timeframe of the transition to Peer Approved Clinical System is urgently needed
• Careful monitoring of health board uptake of new medicines to local formularies may be necessary
You can read all about this in full by clicking on this link HERE
Cross Party Group – March 8
The Scottish Cross parliamentary Group on Rare Diseases met on January 12. Lynn feeds into the workings of this group regularly and would love to hear from anyone in the TSC community in Scotland who would like to get involved in this too. For more information please click HERE
and if you would like to support Lynn in this area of her work then please contact her directly.
Why not fundraise for us in Scotland?
There is something for everyone in 2016!
Pedal for Scotland - Sunday 11th September - There are three distance’s in Pedal for Scotland ride – 9miles, 55 miles and 100miles. So, whether you’re a seasoned cyclist of a leisurely pedaller there is something for everyone!
The Great Women’s 10k Glasgow - Sunday 5th June - Get a group of your girlie friends and challenge yourself to this women’s only event!
Bank of Scotland Great Scottish Run - Sunday 2nd October – Join one of Scotland most iconic half marathon through the centre of Glasgow, and make a real difference in 2016!
Great Scottish Swim - Friday 26th and Saturday 27th August – Can you take on a 1 mile swim in the majestic Loch Lomond? Are you up for the challenge?
If you are interested in taking part in any of these events then please visit the website of the event in which you are interested and contact Fundraising Officer Kathryn Harrison on firstname.lastname@example.org or 0161 681 6015 who will be only to happy to support you.