New & events
The kiwi contingent at the DEBRA Australia Camp/Conference
The Nursing Team
London Adventure
DEBRA Australia Conference
Members & Family
DEBRA NZ Camps 2019
EB Research in NZ
Messages of Condolence
DEBRA International Congress
One minute with Sharon
Ahead of his trip to TwitchCon in the United States as a panelist talking about supportive gaming communities, No Hands No Excuses blogger Humphrey Hanley discusses gaming with EB on Seven Sharp.
To follow Humphrey on video streaming site Twitch, follow his NoHandsNZ channel.
“And then the Internet came along, where suddenly I could be myself without people being able to judge me based on the fact I had a medical problem.”
It is with sadness we let you know that Elaine Fehre passed away on 11 October in Timaru Hospital. Elaine, one of our senior members with EB, was a great supporter of DEBRA NZ over many years. We sent a sympathy card to her husband Kevin Fehre and her family on behalf of all the DEBRA family. She will be sadly missed.
We are counting down to the 2018 DEBRA International Congress with less than 2 months to go. Watch the recording of DEBRA of America’s meeting with the FDA. 2 brand new CPGs are now in development. We need 2 volunteers to help review the Oral Health Care CPG – could this be you? The deadline to apply for the €50,000 Care-for-Rare Science Award closes 31 July. Find out about a new clinical trial called WINGS from ProQR. The 24th IADH Congress will take place in Dubai in August and September with a focus on EB. Apply now for the EURORDIS Winter School!
Contents:
DEBRA International Congress
Bernadette Mark's Story
EB & Genetics
The Nursing Team
DEBRA Members & Family
DEBRA NZ News
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Nehal Tailor's Research Report on improving patient healthcare through online communities
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