Archive for March, 2010
Helpful comments about trips to the optician
Brandy is a member of the Birdshot Uveitis Society as well as the birdshot forum on Lefora. She posted this on Lefora and kindly agreed for us to post it here. I think this is very useful information if your sight has been badly affected by birdshot. Most of us would never think to go to this length – but it makes makes perfect sense to me. › Continue reading
Saffron
Saffron Improves Vision In AMD Patients
We read about this in the latest Vision Newsletter March 2010. It is interesting to see that some serious research is being done into the affect of Saffron on AMD. A couple of our members have suggested that Saffron appears to have helped them but we had no idea that scientific research was being done. › Continue reading
10 Years of EU Orphan Drug Regulation
It is 10 years since orphan drug regulation was implemented in Europe and the European Medicines Agency (EMA) is marking the anniversary with various conferences and workshops during April and May. › Continue reading
Green Tea
New Evidence That Green Tea May Help Fight Glaucoma and Other Eye Diseases
ScienceDaily (Feb. 20, 2010) — Scientists have confirmed that the healthful substances found in green tea — renowned for their powerful antioxidant and disease-fighting properties — do penetrate into tissues of the eye. Their new report, the first documenting how the lens, retina, and other eye tissues absorb these substances, raises the possibility that green tea may protect against glaucoma and other common eye diseases.
The whole article can be found by following this link.
http://www.sciencedaily.com/releases/2010/02/100218125520.htm
Registration for Birdshot Patient Day opens
Saturday 11th September 2010
Doors open at 10.00 for coffee and registration and the conference ends at 16.45 – detailed programme to follow but the day will bring patients and professionals together to network, learn from each other, hear about the latest treatments, build a Birdshot community, lobby for better treatment and design a research programme for the future.
Presentations about Birdshot Chorioretinopathy and future treatments by leading consultants, inspirational speaker, Mike Brace of Vision 2020 (UK) ; an introduction to a possible model that could be used to improve treatment of Birdshot through the UK – Phil Hibbert (UIG); Rea Mattocks and Annie Folkard explaining how the Birdshot Uveitis Society came about and what they’d like to achieve from Birdshot Patient Days.
- There will be up-to-date news and information on new treatments
- Patient and consultants stories about treating birdshot
- Separate breakout groups
- A question and answer session
| From: 10.00 – 16.45
Where:UCL Roberts Building, Torrington Place, London WC1E 7JE
Refreshments provided |
The conference, including lunch, is free, as we have managed to obtain sponsorship but we do require a £20 refundable registration deposit. This can paid on line here (debit and credit card & PayPal). We plan to have an informal social get-together afterwards, details to follow and these will depend on numbers interested. Please contact us for details if you would like to join us for this get together as well. ( birdshot@live.co.uk) You can also apply for tickets by post. Cheques should be made payable to: Uveitis Information Group. You can download the form Patient-day-flyer , fill it in and send it to:
BUS PO Box 64996, London SW20 2BL
Please noted: if you are unemployed we will waive the deposit as we do not want people to be prevented from coming due to financial constraint.
2 members – email address ERROR
We are desperately trying to get in touch with two members whose email addresses appear to not be working. Hopefully the two members will recognise themselves:
User name: Glass
User name: Sue B
You both registered recently, but your email addresses do not seem to be working. perhaps you entered a misspelled email address? If you could email us at Birdshot@live.co.uk, we can respond to you.
Birdshot Patient Day News
Dear All,
Birdshot Chorioretinopathy Patient Day
You are cordially invited to a Birdshot Patient Day organised by The Birdshot Uveitis Society on Saturday 11th September 2010 from 10.00 to 16.45. It will be held at the UCL Roberts Buildings, Torrington Place, London WC1E 7JE. Download our leaflet and registration form here.
The Day is a unique opportunity for people with a Birdshot diagnosis and leading specialists, nursing staff and trainees, to meet, share experiences and learn from one another. We would like as many people with Birdshot to be able to come and share their experiences. We hope it will be an enjoyable and rewarding day.
You will be able to:
- meet the experts
- find out more about new treatments and research
- take part in smaller breakout groups discussing issues affecting you
- help shape the future for people with Birdshot
- have the chance to get questions answered
- talk to health professionals
- meet others with the same rare eye condition
We also want to hear about your ideas for the day, so that they can be included. We would welcome a list of questions you want answered. If you would like to share your Birdshot story, please tell us so that we can try to include it. We look forward to hearing from you and hope to meet lots of you soon.
Annie and Rea
Numbers now registered on BUS
We thought you might like to know some statistics about the numbers of people registered on the BUS site, as we now have 62 people registered as members.
Although the breakdown might not be a 100 percent accurate, we believe we have 33 people who are based in the UK, including, Northern Ireland and Scotland, 17 people in the USA, 3 people in Canada, 2 people in Denmark, 1 person from France, Norway and Portugal and Australia.
Interestingly we have no-one in Wales, but I think 4 or 5 from Scotland and 1 from Northern Ireland! › Continue reading
Inflammatory Eye Disease lecture
Professor Stephen Foster and Professor William Ayliffe – Lecture on Inflammatory Eye Diseases – 24 March at 6.00 p.m.
This is a reminder that Professor William Ayliffe (a uveitis specialist and a Gresham College Professor) is giving a talk on ‘Inflammatory Eye Diseases’ at 6.30 p.m. on Wednesday 24 March 2010 at the Museum of London, London Wall, London EC2Y 5HN. › Continue reading
The Importance of Patients in Research of Rare Diseases
It seems very apt, when we have just finalised the date for our first Birdshot Patient Day for Saturday 11th September 2010, to come across some research by EURORDIS (the EURopean Organisation for Rare DISeases). EURORDIS is the voice of ‘patients with rare diseases across Europe’.
The survey has found that rare disease patient organisations (such as BUS, the Birdshot Chorioretinopathy Uveitis Society) play important roles as catalysts for research on their respective diseases. They can also be valuable partners in identifying the gaps and supporting early research in areas not covered by the public or private sectors.