Category Archives: Uncategorized

Christmas Cards for Sale

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Birdshot Uveitis Society Christmas CardThe Birdshot Uveitis Society’s unique Christmas card, designed for us by Birdshot Uveitis Society member David Bethell are now available for people to purchase.  All profit from the sale of these cards will support the work of the Birdshot Uveitis Society.

Cards measure 150mm x 150mm and are printed on a quality card.  They come in packs of 10 with white envelopes and are priced at £3.95 per pack.  The greeting inside the card is “Merry Christmas and a Happy New Year”.

To order your cards:

Please simply click add to cart button below, type in the number of packs of cards  you wish to purchase, click update and follow the instructions using either a credit card or Pay Pal to pay for your order.




If your order is for more than 6 packs please order by emailing info@birdshot.org.uk and we will send you a Pay Pal invoice  for you to pay which will include the higher rate of postage and packing of £4.95.  Also if you wish to have cards sent to you overseas please email us with your request and we will invoice you with the correct amount to pay via Pay Pal and will dispatch them to you once we have received payment.

You may also order via the post by sending your order and cheque made payable to Birdshot Uveitis Society to BUS Box 64996. London SW20 2BL.

Postage and packing rates

Country Rates
Up to £25 £25.01 & over
UK £3.25 £4.95
Eire & Europe 40% of purchase price, minimum £4
Rest of World 40% of purchase price, minimum £4

Last date for UK orders to allow posting to you before Christmas: 13-Dec-12  Purchases after this date are delivered at your own risk of late delivery

If you want us to send cards overseas, please make sure you allow enough  time for delivery.

Thank you!

 

Government Rare Disease Plan – Consultation

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Birdshot is a rare disease.  Because of this, it can sometimes be difficult to get the right diagnosis and treatment.

The Government will be implementing a Rare Disease Plan by 2013.  This plan SHOULD help all of us, with rare diseases get better services.  But will it?  The plan is now being consulted on, and the closing date for comments is 25th May.

This is our opportunity to give our opinions, and make sure the rare disease plan meets our needs.

You will remember that BUS has worked with Rare Disease UK  (the national alliance for people with rare diseases and all who support them) to help advise the government on what people with rare diseases need.  Some of our recommendations have been incorporated, but we are worried that this plan will not fully meet the needs of those of us with Birdshot and other rare diseases.

Individual patients can respond to the consultation, as can patient organisations and healthcare professionals.  If you are an individual patient, or a healthcare professional, please take the time to have a look at the rare disease plan, and see if you think it will work for you.  The plan can be found at:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_132880

If you want to understand why the proposed rare disease plan might not meet needs, Rare Disease UK have produced a very good presentation that you can listen to at:

http://www.anymeeting.com/RDWebinarEngland/EA56D880804C

If you have any concerns at all, following listening to the above presentation, please do submit your comments to the Department of Health.  If you need help in designing your comments, Rare Disease UK has provided help – just click on the link below.

advice document

Alternatively, you can submit your comments to Rea at info@birdshot.org.uk and she will collate and present them

Many thanks everybody – if we work together, we might be able to get an NHS system that meets our needs!

Important Note re Grange St Paul’s Hotel Concession

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A number of people have been asking about the accommodation offer at the Grange St Paul’s Hotel for the Birdshot Day and there are two things that we need to clarify:

The rate quoted of £109 plus VAT is per room, whether for single or double occupancy.

If you are interested in staying there on either Friday 2nd, Saturday 3rd or Sunday 4th nights, please do not delay in making your booking.  We have only so many rooms allocated to us, and  you must book a room before Sunday 5th February to be guaranteed this rate.  Please  contact reservations and quote “Birdshot Day” when you make the booking.  The contact details for the hotel are:

10 Godliman Street
London EC4V 5AJ
Tel: +44 (0) 20 7074 1000
Fax: +44 (0) 20 7074 1100

Easy Fundraising continues to raise funds for BUS

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Birdshot Uveitis Society supporters raised £118.43

with easyfundraising & easysearch!

There are 13 of us signed up raising money via Easy Fundraising and we have just received a cheque for £37.68 for doing our on-line shopping via the Easy Fundraising website.  This brings the total raised since we signed up about a year ago to £118.43.

We’d like to thank the people who have decided to help us via Easy Fundraising.  It’s simple, painless and it doesn’t cost you a penny more than you would otherwise be spending on yourself and your friends and families, especially at this time of year when you are Christmas shopping.

The Easy Fundraising site  is an excellent, easy, on-line way to help raise money for future research and Birdshot days, while you do your normal on-line Christmas shopping and it doesn’t cost you anything extra. Retailers such as Amazon, Next, Argos, John Lewis, Comet, iTunes, eBay, M&S  and HMV, Clarkes all give money when you shop-online via Easy-Fundraising. You shop directly with the retailer as you would normally do, but if you sign up to http://www.easyfundraising.org.uk/bus for free and use the links on the easyfundraising site to take you to the retailer before you shop, then a percentage of whatever you spend comes directly to us at no extra cost to yourself. This service is FREE to use and will give you access to hundreds of exclusive discounts and voucher codes, so not only will you be helping us while you buy your Christmas presents, you will also help to save money yourself

Susan Krieger faces daily what we all fear

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Susan Krierger suffers from “birdshot retinochoroidopathy,” which the lecturer in feminist studies describes as a “rare autoimmune disease that causes inflammation on my retina and choroid and affects both my central and my peripheral vision.” The upshot: She’s blind, or rather, on a long journey toward blindness.

Krieger’s latest book, Traveling Blind, is her discovery, with companions, of a new world and a new kind of vision as she journeys through cities, airports and the deserts of the Southwest.

Information about Susan’s books can be found here.