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News and Stories: International News

DEBRA International research community

Written by Cheryl Gunning on October 1st 2020

In 2019, DEBRA Ireland, DEBRA UK and DEBRA Austria funded a Consensus Conference, bringing EB experts from various parts of the world together to reclassify disorders with skin fragility, focusing on EB.

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Tags: International News, Research
Categories: News, Research

Funding Research through DEBRA International to advance potential treatments for EB

Written by Cheryl Gunning on July 23rd 2020

DEBRA International has played a vital role over the years in progressing research into treatments and cures for EB. We recently published a Research Impact Report to show the fantastic work being done through DEBRA International.

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Tags: International News, Research
Categories: News, Research

DEBRA International Research Impact Report

Written by Cheryl Gunning on June 15th 2020

DEBRA Ireland has a long history of driving and supporting research with the potential to improve the lives of people living with EB.

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Tags: International News, Research
Categories: News, Research

Gathering of the worldwide EB community – EB World Congress 2020

Written by Cheryl Gunning on February 12th 2020

The first EB World Congress took place in London last month. 600 delegates from over 50 countries attended the sold out event.

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Tags: International News, Research
Categories: News, Research

A European clinical network will improve clinical care for EB

Written by Cheryl Gunning on September 23rd 2016

There has been much activity across Europe recently to establish rare disease European Reference Networks (ERNs), “groups of highly specialised providers across the EU”.

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Tags: Advocacy, International News, Rare disease, Research
Categories: News

Amicus are to acquire Scioderm and further develop their EB wound healing cream

Written by Cheryl Gunning on September 4th 2015

Amicus Therapeutics will acquire Scioderm for its Zorblisa (topical 6% allantoin for the treatment of epidermolysis bullosa)

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Tags: International News, Rare disease, Research
Categories: News

An afternoon of EB research to brighten the last day of winter

Written by Avril Kennan on February 2nd 2015

Working closely with Dr. Wenxin Wang and his team of EB researchers, DEBRA Ireland organised an exciting afternoon of EB research on the last day in January, 2015.

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Tags: International News, Rare disease, Research
Categories: News

Emma Watson supports EB

Written by Cheryl Gunning on December 11th 2014
Emma Watson's tweet

Emma Watson recently tweeted a message about EB to her 15 million followers in support of Sohana Collins, a twelve year old who was born with EB.

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Tags: Advocacy, Fundraising and Events, International News, Media Coverage, Patients' Stories, Research
Categories: News

‘Butterfly child’ dreams of the Northern Lights

Written by Cheryl Gunning on November 10th 2014
Jonathan Pitre dreams of Northern Lights

Nothing, but nothing, is easy in the life of 14-year-old Jonathan Pitre — save for the sleep that descends on him each evening in a cloud of methadone.

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Tags: International News, Patients' Stories
Categories: News
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