Urgent your help is needed – Specialist Commissioning Debate

MPs are debating Specialist Commission this Thursday 15th January.  Please write to your MPs enlisting their support and ensuring that they attend this debate.

This is relevant to you because in the future Birdshot will come under specialised Commisioning  and we need to make sure we get good services. At the moment, the government is trying to squeeze funding away from specialised commissioning and you may already be aware that they are planning not to fund anti TNFs  (drugs like Humira and Infliximab) for people like us.

Below is a draft of a letter that you can alter as you wish to send to your MP.

Specialist commissioning letter draft

and a briefing paper which you might also like to send.

SHCA Briefing Materials for Westminster Hall debate on national commissioning of NHS specialised services – Jan 2015 specialist commissioning letter

3 small grant awards for research into Birdshot

We are delighted to announce that we have just heard from Fight for Sight that the call for the Joint Small Grant Awards Scheme is now open.

The link to the Small Grant Awards Schemes webpage is http://fightforsight.org.uk/funding-types/articles/small-grant-awards-schemes

This year we have  three small grants of £15,000 available for Birdshot Research.  The closing date for applications is 5pm on Wednesday 27 August 2014.

 

 

Exciting news from Maryland, USA

BUS recently received an invitation below and would like to advertise the following Uveitis event and encourage members to attend if they live  close by and are are interested and able.  It’s a great initiative and gives you an opportunity to meet others who suffer from Birdshot and learn more about the Birdshot and Uveitis research that is being undertaken at the Wilmer Eye Institute. Continue reading

Talks from the Birdshot Symposium September 2013

Below are links to the different talks which were given at the 2013 Birdshot Symposium, hosted by Stephen Foster from the Ocular Immunology and Uveitis Foundation in Boston USA.  Its a terrific resource of talks given by specialists from across the world, which you can dip into if you want to find out more and  hear what the experts have to say.  Note:  they are aimed at doctors not patients so they are quite technical and detailed so will probably be better watched in separate sessions.  They  are posted on the Ocular Immunology and Uveitis Foundation website:http://www.uveitis.org/video/ 

  1. Best Monitoring Practices for BSRC – Henry Kaplan, MD
  2. Identifying the Gaps in Knowledge about BSRC – Albert Vitale, MD
  3. BSRC Epidemiology and Natural History – Albert, Vitale, MD
  4. Determinants of Remission and Cure – Phuc LeHoang, MD, PhD
  5. Birdshot Outcomes with Corticosteroids
  6. Immunogenetics of BSRC – Ralph Levinson, MD
  7. Cortocosteroid Implant Therapy for BSRC – Henry Kaplan, MD, FACS
  8. Navigating the Off Label Use Maze – Frances Foster, MS, NP
  9. BSRC Outcomes with Immunomodulatory Therapy – C. Stephen Foster, MD, FACS, FACR
  10. Biologic Response Modifier Therapy for BSRC – Antoine Brezin, MD, PhD
  11. Definition and Etiology – Antoine Brezin, MD, PhD
  12. Drugs in Development for BSRC – Bahram Bodaghi, MD, PhD
  13. The Unknown or Unaccepted Truths about BSRC – Carl Herbort, MD