This exciting new free to attend event in our annual calendar will be held on Friday, 27 September at the Kent’s Hill Conference Centre in Milton Keynes. Registration opens at 9.00am with the welcoming address at 10.00am. We expect the event to end at 3.30pm.It is a one-day conference aimed at education, health care and social care professionals and volunteers supporting those with inherited sight loss conditions. This will include Eye Clinic Liaison Officers (ECLOs), Rehabilitation Officers for the Visually Impaired (ROVIs), Qualified Teachers of the Visually Impaired (QTVIs), Mobility Officers, Clinicians, nurses and other medical professionals.
The Conference will allow you to:
- Hear the personal stories of those affected by inherited retinal conditions, get an update on the latest research including genetic testing and counselling, the search for treatments and how patients can get involved in research.
- Further your understanding of the conditions and the unique challenges faced by those living with or affected by inherited retinal conditions to help you provide the best support.
- Network with other professionals working in this area and learn from each other’s experiences
- Speak with exhibitors , including our generous sponsors Oxsight, and try out the products available to support those living with inherited retinal conditions.
- Learn how Retina UK can support you and those you care for/support – including services and resources available.
- Understand what support/information/resources are available from other charities and organisations.
- Meet Retina UK’s friendly, knowledgeable staff.
Kents Hill Park Conference Centre is an easy-to-access central location about five miles from Milton Keynes Central Train Station and close to the M1 Motorway. There is also accommodation and free parking available on site.
If you have any questions or would like to speak with us about this event, please don’t hesitate to contact us at info@RetinaUK.org.uk or call us on 01280 821334.
Findings from our sight loss survey
Retina UK recently published its unique insight into the experiences of those living with inherited retinal conditions.
Almost 1,000 people completed a survey earlier this year to help the charity understand the real-life experiences, challenges and expectations of those living with these conditions. Over half (53%) say their sight loss has a severe or very severe impact on their quality of life and loss of confidence, anxiety and stress are the biggest emotional or psychological impacts of sight loss.
Tina Houlihan, Chief Executive, said: “We are an organisation entirely focussed on people living with inherited retinal dystrophies; to make the biggest difference for our community and have the right priorities we need to constantly learn more about real-life experiences, challenges and expectations of families living with these conditions.”
Awaiting funding decision for Luxturna
Luxturna is currently undergoing appraisal by the National Institute for Health & Care Excellence (NICE) and the Scottish Medicines Consortium (SMC), which provide guidance to NHS England and NHS Scotland about which treatments they should fund. (Wales and Northern Ireland are likely to follow England’s lead.)
Retina UK is actively involved in this process; we are working hard to make sure that our community’s voice is heard and that NICE and the SMC fully understand the enormous difference that an effective gene therapy could make to the lives of young people with inherited sight loss.
We expect NICE to publish their formal guidance on NHS funding in December 2019. If the outcome is positive, the NHS will need to establish a pathway for treatment and commission a small number of specialist treatment centres. All being well, Luxturna may be available on the NHS from spring 2020.
Retina UK is excited to be holding our first ever conference specifically for professionals who support our community on Friday 27 September 2019. You will hear the personal stories of those living with inherited retinal conditions, gain an insight into the latest research including genetics, and learn about the psychological impact of a diagnosis.
Local Peer Support Groups
Our Retina UK Local Peer Support Groups enable individuals and families to get to know each other
and engage with Retina UK.
Group meetings are scheduled in Oxford (12 September), Edinburgh (28 September), Merseyside (30 September), Glasgow (5 October), Isle of Wight (2nd Monday of each month), Taunton (12 October) and London (26 October).
Northern Ireland Information Day
Our final information day of the year is coming to Belfast on Thursday 24 October 2019 (10.00am – 4.00pm). Amongst many other speakers we have Professor Peter Humphries, a leading researcher of genetics of degenerative diseases of the retina joining us. This event is a great opportunity to find out more about Inherited Retinal Dystrophies (IRDs); the latest research, to put your questions to the experts, meet other people and engage with the charity.
We’re here to help
Retina UK offer a free telephone and email service to those living with inherited sight loss, their family and friends, employers, and health, social care and education professionals.
They can provide information and/or signposting on employment matters, mobility aids, benefits or technology to allow you to better support your clients?
Retina UK’s helpline team all have personal experience of inherited sight loss conditions.
Call: 0845 123 2354
Open 9.30am to 9.30pm Mon to Fri
Largest meeting of families with Usher syndrome
Over 70 people gathered in Birmingham for the largest meeting of families living with Usher syndrome in the UK. Retina UK and Sense supported Usher Kids UK to hold its first family event in June.
Retina UK’s Matt Carr, said: “It was a really positive event and a fantastic example of how Retina UK works with other groups to make the biggest difference for our community.”
How can we best support you?
Retina UK would like to engage more closely with the professional community and to enable us to do that most effectively, we’d like you (our existing professionals’ community) to tell us how we can best support your work. That might be holding more information days, providing information and leaflets or something else entirely. Please get in touch with Matthew Carr and Denise Rawden, our Regional Services Managers to let them know services@RetinaUK.org.uk.