We are pleased to tell you that we have recently been accepted as a member of EURODIS.
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. The link above takes you to the EURODIS website.
Here are some thumbnails from the Birdshot Day. Click on any of them if you want to see an enlargement of the whole image. We hope it will give you an idea of what the day was like. These are just a few of the 130 people who came. There are more pictures to come. Annie
This month we are delighted to announce that we have articles about the Birdshot Day and Birdshot in two well known prominent publications. Optometry Today has a short piece advertising the Birdshot Day and NB magazine September 2010, published by RNIB, has a four page spread which includes interviews with Rea, Annie and Narciss, as well as Professor Andrew Dick from Bristol Eye Hospital who is Chairman of the Uveitis Information Group professional panel.
NB investigates Birdshot chorioretinopathy and describes how patients are taking the lead in researching the condition and providing support for those who have it. Continue reading
A Huge Thank You to Everyone who attended the Birdshot Day for patients and professionals
We so appreciated the fact that you spent your precious time not only attending the Birdshot Day, but contributing and making it such a great learning opportunity for BUS and Moorfields and all the healthcare professionals and people with Birdshot who attended.
It was really exciting for us to be able to meet so many people with Birdshot and so many professionals who cared about Birdshot and to watch the buzz generated during the networking and question opportunities. Given that this was our first attempt, we really do want to learn from it and make it even better. All the feed-back you have already given us will be analysed carefully so that we can learn from it.
However, If you have any reflections or feelings or comments or take-home messages about the day, please let us know by posting them here, or emailing us – short comments, long essays, emotional reflections, – whatever you choose to write will be gratefully received by us.
The three of us – (Rea, Annie, Narciss) had a conversation at the end of the day, and, apart from being exhausted, we were so exhilarated by being able to begin to dream that we might form a ‘Birdshot Community’ that can bring about real change in people’s lives. We were also slightly tearful – some of the tears were because it is still an emotional experience for Rea and Annie to meet others with Birdshot and exchange stories; some of the tears were to do with the genuine emotion and strength shown by both people with Birdshot and healthcare professionals.
Please, please do let us know your feelings, comments, reflections, emotions, take home messages or anything that has come to your mind since attending the Day.
Thank you all for attending and making this such a special occasion.
Rea, Annie and Narciss
Both Rea and I have problems with getting our Cellcept prescriptions from time to time due to shortages of the drug at the wholesalers. Birdshot Uveitis Society has written about this difficulty before. Now the Association of the British Pharmaceutical Industry has taken it up. This is something we should all lobby our MPs about, because most of them are totally unaware of the difficulties we face obtaining our monthly prescription.
Urgent action is needed to tackle the worsening problems UK patients face when trying to receive their medicine prescriptions, according to the UK’s Association of the British Pharmaceutical Industry (ABPI). Continue reading
If you have registered to come to the Birdshot Day it would be really helpful if you could print off the days papers and bring them along to the day. We would also appreciate it if you could bring a pen along. We’ll have a few pens for those who forget to bring them – but not enough for everybody! And we think you will need one! Continue reading
Below is the detailed programme for the Birdshot day. We are very excited that so many excellent expert speakers have agreed to participate at our first Birdshot Day. This day has been organised by BUS, Narciss Okhravi and key people from Moorfields. The fact that we have been able to organise such a day is testament to the hard work and commitment of these people.
It is a great honour to be able to welcome Professor Phuc LeHoang and his colleague Dr Christine Fardeau to talk about the latest birdshot research programme that they are carrying out in France. We will also get the chance to hear about future developments and will be introducing the Pan European Birdshot Research Network to you all. We are most fortunate to have the help and support of Professor Miles Stanford of Guys and St Thomas’s NHS Trust, Mr Carlos Pavesio, Miss Narciss Okhravi and Mr Mark Westcott from Moorfields Eye Hospital, Professor Andrew Dick of Bristol Eye Infirmary and Professor Phil Murray of Birmingham University.
Book your places now. 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). Please note that the payment will show that it is being made to the Uveitis Information Group.
You can also pay by cheque and information about how to do this is here.
If you are unemployed we will waive the deposit as we do not want people to be prevented from coming due to financial constraint.
We have been advertising the Birdshot Day and our website in as many places as possible, as we want everyone who has birdshot, their families and friends and health care professionals with an interest in the condition, to have the opportunity to come to participate and learn.
Graphic Artist David Bethell has designed another superb poster specifically to advertise the day. Please contact us at Birdshot@live.co.uk if you would like a copy of the poster to display in the eye clinic (you will need to ensure you give it to the right person to get it displayed). If you prefer you can download the poster from the site and print copies. We have a choice of colour or black and white.
We need your help to make sure the Birdshot Day is widely publicised in the right places.
We now have links to the Birdshot Uveitis Society’s website on a growing number of national and international sites as well as sites such as Facebook, Wikipaedia, Rareshare, Birdshot lefora forum and a many more. If you have ideas about other places we should advertise our Birdshot Uveitis Society website and the Birdshot Day, we would be grateful for your suggestions.
Below are a number of links to sites where the Birdshot Uveitis Society is mentioned.
Many thanks. Annie
Guide Dogs for the Blind
Article in Orphanet News April 21st about the Patient Day
RNIB – Rare Diseases and the Events listing
We Promised to Re-Issue the Article on Saffron – here it is:
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
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