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 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.

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

American Uveitis Society

Contact a Family

Guide Dogs for the Blind

Orphanet

Article in Orphanet News April 21st about the Patient Day

PIC Society

RNIB – Rare Diseases and the  Events listing

UK Patient Plus

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.

“A clinical trial has found that saffron, the famous Indian spice, can improve vision in patients with AMD, according to new reports. The trials were conducted by Silvia Bisti of the University of Sydney. The trial participants showed significant vision improvements after taking a saffron pill for three months, she said. “Measurements using objective eye sight tests showed patient’s vision improved after taking the saffron pill. When they were tested with traditional eye charts, a number of patients could read one or two lines smaller than before, while others reported they could read newspapers and books again.” The trial was double blind and randomly controlled, involving 25 subjects over six months. Half the group were given a saffron pill for the first three months followed by a placebo, while the other half were given the pills in the reverse order. “All patients experienced improvements in their vision while taking the saffron pill,” Dr Bisti said. “But when they stopped taking the pill the effect quickly disappeared”

http://www.myvisiontest.com/news.php

In April 2000, Regulation (EC) No 141/2000 of the European Parliament and the Council on Orphan Medicinal Products came into effect. Since then, over 700 products have received orphan designation to treat rare disorders.

The regulation established the criteria for orphan designation in the EU and delineated the incentives, including market exclusivity, protocol assistance, and access to the centralised procedure for marketing authorisation. The regulation was also developed to encourage the research, development and marketing of medicines to treat, diagnose or prevent rare diseases.

Two workshops and a conference are scheduled to take place at EMA headquarters in London. The first workshop, on nanomedicines, is scheduled for April 26-27, and the second, on May 10, will focus on stem cell-based therapies.

Then on May 3-4 there will be a conference, entitled 10 Years of the Orphan Regulation in Europe, featuring plenary sessions, discussions and three parallel workshops on the development of products for rare diseases, research for rare diseases and patients’ views on the Regulation.

Further details are available from the EMA.

We will keep you up-to-date if we hear of any interesting developments.

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

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.

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

Birdshot Uveitis Society  (email: birdshot@live.co.uk)

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!

The majority are people who have a diagnosis of birdshot, although we have a few family members who have also registered on the site because of their interest in the disease.

We welcome registration from all patients with a diagnosis of Birdshot, and would urge you, if you have not done it already, to fill in our consent form and send it to us, so that you can be properly registered on our Database.

The Database will help in future studies into why people are getting this rare disease and we hope it will help us find better treatments. Without information about patients who have this diagnosis, there will never be enough numbers to make proper progress because the eye condition is so rare.

You can post your consent form to our PO BOX address of Birdshot Uveitis Soceity, PO Box 64996, London SW20 2BL or scan it back in and email it to our birdshot@live.co.uk email address.  We look forward to receiving them!

We also encourage professionals working with Birdshot or uveitis to register, so we can develop a ‘birdshot community’. Healthcare professionals will benefit from the information and advice and the patient stories on the website as well as the News items, where we keep you all updated about what is new in the birdshot world – treatments, government initiatives, get togethers, etc.

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.

Professor Ayliffe has invited Dr/Professor Stephen Foster as a guest speaker.  Many of us with Birdshot know William Ayliffe as someone who has an interest in the disease and Stephen Foster as some-one who works very closely with patients and has undertaken research into Birdshot.  Stephen Foster is from Boston, USA, where he works at MERSI – the Massachusetts Eye Research and Surgery Institution, and has set up The Ocular Immunology and Uveitis Foundation which conducts research.

An extract from the Gresham College brochure states ‘From pioneering use of immunomodulation in the 20th century to biological therapies in the 21st century, Professor Foster will comprehensively describe the current and future status of managing these terrible diseases.’  The lecture normally lasts about an hour.

We have heard Stephen Foster and Will Ayliffe talk on numerous occasions, and they are both inspiring (and care deeply about people with Birdshot).  The lecture is free, and is attended by a mix of members of the public, student medics and health professionals.  They are always great value, and we always learn something from them.  This is your opportunity to hear directly from two world renowned experts on uveitis.

We are also planning a ‘get-together’ for any people with Birdshot and/or BUS members planning to attend the event – we will be in a nearby pub from 5.00 p.m. until the start of the lecture, wearing our Birdshot T shirts so we are easily recognisable.  We can also adjourn to the pub (where they serve good food) after the lecture.  Hopefully, we can up-date you on the proposed Birdshot Patients Day in September, and any other issues you want to talk about.  It is also your opportunity to meet other people with Birdshot.  We may also get a chance to talk directly to Will Ayliffe and Stephen Foster after the lecture!  They have been notified that we are planning to attend, and have promised to let the audience know about the Birdshot Uveitis Society.

Please email us at Birdshot@live.co.uk to let us know if you are attending, so we can look out for you.  If you let us know, we will e mail you with details of the pre and post lecture venue (the pub).  Some of you have already let us know, and we will email you with the details.  If any Birdshot person/BUS member wants to come from a distance and needs somewhere to stay, Rea may be able to put you up, so please email to the Birdshot email address to discuss.

Rea and Annie

Date: Wednesday 24th March.  Time: 6.00pm  Venue: London Museum

Rare Disease Day is an annual, awareness-raising event co-ordinated by EURODIS (the European Rare Disease Association which is the voice of rare disease patients across Europe) at a national and international level.

WHEN IS RARE DISEASE DAY?

Rare Disease Day is observed on the last day of February.  Therefore the 2010 Rare Disease Day is Sunday 28th February.  However, many events occur well before this date, and many continue well after this date.  Awareness raising events take place in each participating country.

WHO CAN TAKE PART?

Individuals, patients, patient organisations, health professionals, researchers, drug developers, public health authorities – the more, the better!

• To find out what is happening in the UK go to http://www.rarediseaseday.org/.
• To find out what EURORDIS is doing to bring attention to rare diseases on this day,  go to http://www.eurordis.org/

WHY IS RARE DISEASE DAY IMPORTANT?

Rare Disease Day is the perfect occasion to inform or remind people that rare diseases need to be paid special attention to, because:

Rare diseases are life-threatening or chronically debilitating diseases with a low prevalence and a high level of complexity. Patients with very rare diseases and their families are particularly isolated and vulnerable. The life expectancy of rare disease patients is often significantly reduced and many have disabilities that become a source of discrimination and reduce or destroy educational, professional or social opportunities.

The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore often without quality of life.

The lack of specific health policies and the scarcity of expertise translate into delayed appropriate diagnosis and difficulty of access to care. The national health care services for diagnosis, treatment and care of rare disease patients differ significantly in terms of their availability and quality. European citizens have unequal access to health care services and to orphan drugs. UK citizens also have unequal access to health care systems as each health region may have different expertise, understanding, funding situations and approaches.

Research on rare diseases is scarce.

WHAT IS THE DEFINITION OF A RARE DISEASE?

The definition varies from country to country.  For example:

1. European definition (including in the UK) of rare diseases:  ”life-threatening or chronically debilitating diseases which are of such low prevalence (less than 1 in 2,000 or 5 or less in 10,000) that special combined efforts are needed to address them.” .  Diseases that are statistically rare, but not also life-threatening, chronically debilitating, or adequately treated, are excluded from this definition.
2. US definition: “any disease or condition that affects less than 200,000 persons in the United States.”
3. Japanese definition: any disease that affects fewer than 50,000 patients in Japan, or about 1 in 1,500 people.

WHAT IS THE DIFFERENCE BETWEEN INCIDENCE AND PREVALENCE?

Prevalence is the  number of people living with a disease, at a given moment.  Incidence is the number of new diagnoses in a given year.  There are between 6,000 and 8,000 rare diseases.

 HOW MANY RARE DISEASES ARE THERE?

The Rare Disease Coalition UK quotes over 3.5 million people with rare diseases in UK and 30 million in Europe.  They  also state that  1 in 17 people in the UK will develop a rare condition at some point in their life.

In 2008 the population of the UK was recorded as 61.3 million.  We estimate that there are between 400 and 600 people with Birdshot in the UK.  Therefore there is approximately 1 in 150,000 people in the UK with Birdshot.

What is an orphan disease? It is a disease that is so rare that it has not attracted funding for the development of treatments.  Birdshot fits in to this definition.

What is the UK view on rare diseases and orphan diseases? In 1998 the European Union recognized rare disorders as a public health issue faced by 5-8% of the population across Europe. It was agreed that a pan European approach would improve the situation of all those affected by rare disorders. Hence a Programme of Community Action on Rare Disorders (1999-2003) was produced and funded for this purpose, designed to:

• Promote the development of a single and coherent information network on rare diseases.
• Promote trans-national collaboration and networking between support groups and organisations.
• Contribute to the training of professionals in order to improve early detection, recognition, intervention and prevention.
• Support the monitoring of rare disorders in the EU Member States and promote the networking of professionals.

BIRDSHOT STATISTICS

Birdshot is considered to be a rare disease under the UK/European definition, and we, with Birdshot, know all too well of the struggles and battles to get appropriate diagnosis, treatment, understanding of the disease and research into more appropriate medication or prevention of the disease.

With Birdshot, we do not know either the incidence or the prevalence.

Initial research we (Rea and Annie) undertook shows that there are at least 300 people in the UK with Birdshot (the prevalence), but we suspect that this is under-reported, and it is important for us to undertake epidemiological research to establish the incidence and prevalence, before we can move on to research to determine what causes the disease and how we can treat or prevent it into the future.  We also believe the incidence of Birdshot is increasing, either because it is being more readily diagnosed, or because more people are getting it.  We also note that the disease seems to affect both males and females (it used to be believed that it was biased towards females) and that it seems to be affecting younger people in their 20s and 30s as well as people in their 40s and 50s and later.  It used to be believed that the mean age of onset was early 50s.

ORGANISATIONS WORKING WITH RARE DISEASES

• Rare Disease UK is an alliance of key stakeholders brought together to develop strategic planning for rare diseases in the UK.  It is a joint initiative of the UK alliance of patient organisations with a membership of over 130 charities which support children, families and individuals affected by genetic disorders and others, in response to unmet health care needs of hundreds and thousands of families who currently struggle to get access to integrated care and support from the NHS.  It will help ensure the efficient use of scarce expertise, and  target the use of health care resources to maximise the benefits for all UK patients with rare diseases.
• EURODIS is the European Organisation for Rare Disorders, a coalition of patient organisations geared toward improving the quality of life for those affected by rare disorders in Europe. It was created in 1996, to carry the voice of as many organisations as possible at a European wide level,to co-ordinate actions and to facilitate exchanges of information.
• EPPOSI is an EU patient-led partnership between patients’ organisations, science and industry, founded in 1994 for the exchange of information and discussion of policies in EU human healthcare.  EPPOSI’s primary mission is to establish a strong European alliance of patients’ organisations, academic science and industry jointly working on health care policies towards treatment and prevention of serious diseases.
• Orphanet is a database of information on rare diseases and orphan drugs for all countries. Its aim is to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases. Orphanet includes a Professional Encyclopaedia, which is expert-authored and peer-reviewed, a Patient Encyclopaedia and a Directory of Expert Services. This Directory includes information on relevant clinics, clinical laboratories, research activities and patient organisations.
• Sigma-Tau is a pharmaceutical company that develops drugs/medication specifically for people with certain rare/orphan diseases.

WHAT DO PEOPLE WITH A RARE DISEASE FACE?

Nearly all patients with rare diseases face common problems including:

o Lack of access to correct diagnosis

o Delays in diagnosis

o Lack of information about the disease

o Lack of scientific knowledge of the disease

o No appropriate treatment for the condition

o Significant social consequences

o Lack of appropriate quality healthcare

o Inequities and difficulties in access to treatment and care

We, with Birdshot have experienced many of these problems and BUS strongly believes that people with Birdshot (and other rare diseases) should be receiving at least as good treatment as people with diseases that are not classed as rare or orphan.

WHAT IS BUS AND UIG DOING TO SUPPORT RARE DISEASE DAY?

UIG, through Rea Mattocks (chair of UIG and co-founder of BUS) sits on one of the working groups set up by the Rare Disease UK coalition.  The working groups are developing a proposed strategy for the treatment of rare diseases in the UK.

Rea and Annie have been interviewed about their stories – these stories should be appearing in the national and local media over the next few weeks – we will keep you posted about when and where they are likely to appear.

UIG and BUS have been attending the All Party Parliamentary Groups of Eye Health and Rare Diseases to make sure that our views are taken into account in relation to governmental policy.

BUS has been busy setting up an annual Birdshot conference which will further raise the profile.

BUS has offered support to clinicians dealing with Birdshot to help them find their way round the complex health care systems, in the event that patients are turned down for various medication regimes.

If you can think of any other ways of getting our message across, please e mail us at Birdshot@live.co.uk

We will be trying to place our new A4 hospital poster in eye clinics where uveitis is treated, so people who have a diagnosis of Birdshot can contact us for information and support.

If you want to make sure that the eye clinic you attend displays the poster, we would be grateful if you could write to us at Birdshot@live.co.uk with the name and address of your clinic/eye hospital and the name of your consultant.  We want to make sure we get the posters to the right person.  Alternatively, if you would like to take the poster in yourself, write to us at Birdshot@live.co.uk and we will send you copies.  There is also a version in  yellow and black.

Please help us to spread the word.

Once again our thanks must go to  David Bethell,   (our logo designer) , who has designed this striking poster for us.  We are very grateful for his valuable contribution in helping to get BUS and Birdshot better known.