We recently interviewed some of the world’s foremost experts on EB research and captured their thoughts, in this video, on what the future holds.
Read MoreThe Future of Treatments for EB
Articles by @oldhat
Shire attend DEBRA Ireland family day
Shire, the global specialty biopharmaceutical company, recently announced its acquisition of Lotus Tissue Repair and their recombinant collagen VII protein replacement therapy which is in development for the treatment of DEB. Following this recent announcement, Dr. Anil S. Jina, Vice President and Head of Global Medical Affairs at Shire, attended DEBRA Ireland’s family day on May 12th.
Read MoreThe News from the 2012 EB Research Conference
The value of DEBRA International is never clearer than at the EB research conference, which it organises every three years. The 2012 conference was held in November in Marbella, Spain, and brought together almost 100 of the world’s top EB researchers, and a number of patient representatives.
Read MoreLarge pharmaceutical company shines spotlight on EB
In big news for the EB community, it was announced in January 2013 that the global pharmaceutical company, Shire, has signed an agreement to acquire Lotus Tissue Repair, the biotech company currently developing a protein replacement therapy for dystrophic EB (DEB).
Read MoreChristmas Raffle Winners 2012
We are so grateful to each and every one of our supporters who sold raffle tickets for us in 2012. Because of your help and support, we raised valuable funds which are going to our Patient Support Services – to continue existing services and to help us expand on them.
Read MoreDEBRA International launch new website
EB specialists gather for the first EB-CLINET conference
106 participants from 33 countries gathered in Salzburg, on 5-7 October 2012, for the inaugural meeting of EB-CLINET – the clinical network for EB centres and experts. Organised by the Academy of the EB House Austria, the meeting formalised the establishment of the European (and international) Reference Network for EB.
Read MoreMedical Card Application Process to Improve for EB patients
With the help of Senator Colm Burke, we recently obtained a meeting with Patrick Burke, the director of the HSE division that deals with medical cards and other health entitlements. We informed Mr. Burke and his senior staff, of the difficulties experienced by families living with EB, in accessing their entitlements
Read MoreDEBRA Ireland meets Minister for Health
As part of our advocacy campaign to improve the care of Irish families living with EB, we met with the Minister for Health, Dr James Reilly in May. The Minister was very sympathetic to the difficulties experienced by families and was particularly interested to hear from our Family Ambassador, Liz Collins, on what life is like as the parent of a child with EB.
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