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April 2015

The latest news from DEBRA International

April 2015

Clinical and research news

DEBRA International calls for Clinical Research and Clinical Trials proposals

Timeline from December 2014 to December 2015, showing the stages of two research funding calls
Timeline of the research funding calls 2015

DEBRA International has issued a call for proposals from EB clinical researchers for late preclinical research and clinical trials to address the development of promising treatments for all types of EB. The call is different in that it not only covers therapies that aim to address the underlying causes of EB, but also 'symptom-relief' treatments that, while not aiming to cure, will alleviate the painful and distressing symptoms of EB and improve quality of life. Read more

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

Group of people at a guided tour through Charles Institute  of Dermatology
Prof. Martin Steinhoff explains the fascinating story behind the Charles Institute

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. This event was held in the Charles Institute of Dermatology, in University College Dublin. The Charles Institute is not only a stunning building but is also unique in being solely dedicated to the topic of dermatology. The afternoon began with a tour of the institute by the Director, Prof. Martin Steinhoff, and was followed by a series of scientific presentations. Read more

Testing a topical skin treatment for EBS, RDEB and JEB: Upcoming clinical trial

Scioderm logo

The clinical trial will assess improved wound healing as well as reduced itch and blistering in EB, and is scheduled to start soon in the USA and Europe. Scioderm carried out an earlier Phase 2 trial to assess the safety, and effectiveness of its topical skin therapy, SD-101, for people with various types of EB. The Phase 2 trial looked at the improvement in complete wound healing, blistering, itching, and pain. Scioderm believes that, based on the benefits seen to date, SD-101 has the potential to benefit people across the three main types of EB. They also report that SD-101 has been well tolerated to date, with no safety concerns. Read more

Home is where your heart is: New DEBRA House in Chile

Doctor, mother and child with EB in a wheelchair inside the new building
Dr. Susanne Krämer welcomes a family to the new DEBRA House

DEBRA Chile was given an old house located in Ñuñoa (Santiago) from an internationally active charity and has transformed it into an EB specialist centre.

The badly needed renovation works were recently completed, and the opening of the new DEBRA House was just announced. It offers support and medical care for people living with EB in Chile and beyond. Read more

Russian medics visit Birmingham Children's Hospital

Group picture in a meeting room

A team of Russian medics made a visit to Birmingham Children's Hospital to meet patients and hear from world-leading rare skin disease experts at the hospital. The team from St Petersburg Children's Hospital No 1, wanting to set up a specialist clinic to treat Epidermolysis bullosa, came to learn more about the condition at Birmingham Children's Hospital - one of the world-leading centres to run a specialist paediatric service for EB. Read more

Special care for butterfly children in Moskow's new EB clinic

Front view of the building
Mother with child with EB in a patient's room
Consultation of a lady with two doctors

One of the leading Russian pediatric institutions, the Moscow-based Scientific Center of Children's Health, has recently opened a special clinical department for children with EB. This is the first and the only clinical centre in Russia, where the often-called ’butterfly children’ may have a complete health examination by experts with various medical profiles. They also receive the appropriate treatments, for their particular symptoms. Read more

Exciting research development in EB iPSC stem-cell treatments

Three research groups from around the world have recently simultaneously published promising results in developing a new therapy technology called 'induced pluripotent stem cells' (iPSC) for EB. There are many research questions still to be answered and many years to go before a safe, effective treatment based on iPSC will reach the clinic. However, there is now strong evidence from these separate studies to support the idea that this approach can correct the underlying cause of EB. Read more

Events

DEBRA congress and EB-CLINET conference overlap in London

Conference badge with an image of Big Ben (London) and a "Save the date"
DEBRA International logo

London will be focal point of the worldwide EB community this September. Both the upcoming DEBRA International congress and the 3rd EB-CLINET conference will take place there from 24-26 September and will share a day of the programme on the 25th.

While at the DEBRA meeting, delegates of the national DEBRA groups get together, the EB-CLINET conference is targeted at clinical EB experts. Yet, there are many areas of overlapping interest and the combined meeting is particularly good news for those coming from distant countries.

A huge amount of effort has gone into planning the programmes and we know that the days spent in London will be extremely worthwhile. The venue has been announced as the Royal Society of Medicine in Central London. This year, it is particularly urgent to book accommodation early as dates coincide with the Rugby World Cup, hosted by the UK. We cannot urge this enough. See all details here

EB2015, Atlanta: It's time for the triennial EB research conference

Front view of the conference venue "Château Élan"
Conference venue 'Château Élan'

A global array of EB researchers will be gathering in May for the EB2015 triennial research symposium. DEBRA of America is hosting the conference at Château Élan, located in the outskirts of Atlanta, Georgia. Brett Kopelan, Executive Director of DEBRA, is proud to announce that the breadth of expertise and topics covered in the 'bench to bedside' programme has resulted in the National Institutes of Health (NIH) agreeing to provide funding for the conference. Read more

Viral rare disease video with a focus on EB

Screenshot of a video, showing a hand shadow
Official video for Rare Disease Day 2015: "Living with a Rare Disease - Day-by-day, hand-in-hand"

This year's Rare Disease Day on 28th of February video focused on supporting hands and featured a young woman with EB. The theme was 'Living with a rare disease – day-by-day, hand-in-hand'. EURORDIS produced a beautiful video on this theme, using hand shadows to depict the importance of working together to support those with rare diseases. Since its launch, it has been watched over a million times on Facebook! The video features 24-year-old Beatrice from Rome, who has EB. Read more

DEBRA around the world

Michael Fitzpatrick takes on the Executive Officer role

Portrait of Michael Fitzpatrick
Michael Fitzpatrick, new Executive Officer of DEBRA International

With John Dart retiring from his role on a gradual basis, Michael Fitzpatrick from Australia has been appointed as the new Executive Officer and is quickly settling into the role.

A word from our new Executive Officer: "I have been involved in DEBRA Australia and DEBRA International to support people living with EB, like my son Connor, for a number of years." Read more

Strong voices for EB

Composite of 3 pictures; left: Portrait of a lady with short bright hair; middle: portrait of a man in his sixties; right: man in suit at a speaker's desk
Vlasta Zmaczek, John Dart and Brett Kopelan

We are delighted to report that Brett Kopelan, Executive Director of DEBRA of America, was recently elected as Chairman of the Board of Directors of the National Organization of Rare Disorders (NORD) in the US. Consequently, DEBRA, and EB in general, has a strong voice in policy development and advocacy at the highest levels of US government. Also, as many of you will be aware, John Dart was appointed Secretary General of EURORDIS in 2013 and continues to play an outstanding role in EURORDIS’ mission to be the voice of those living with rare diseases in Europe. He is joined on that Board by Vlasta Zmazek of DEBRA Croatia, who has also given many years of valuable support to the efforts of EURORDIS. Read more

"It's unreal": Story of Canadian boy with EB goes viral

Jonathan Pitre, with naked torso (wounded and with blisters), and his mother, against black background

DEBRA Canada launched their annual EB Ambassador Wish program in conjunction with the International EB Awareness Week 2014. The fundraising and awareness campaign focused on two Canadian EB patient ambassadors - Deanna Molinaro and Jonathan Pitre, both of whom have Recessive Dystrophic EB. Jonathan's story struck a chord with the hearts of thousands, achieving amazing awareness and funds for EB in Canada. Read more

A focus on DEBRA Spain: Bringing the families together

Group picture of Spanish families living with EB

DEBRA Spain gathers families from all over the country, once a year, with the objective of creating long-term and 'essential' networks between people with EB, family members, health professionals and researchers, enabling the opportunity for people to learn from and help each other. At the family meeting last October, people of all ages and generations shared a mixture of presentations, workshops and activities. Read more

DEBRA Portugal launches newsletter

Cover of the first issue of the DEBRA Portugal newsletter

DEBRA Portugal has just turned four. Since its inauguration, there has been a constant recognition of the need to share updated information. Even with social media news sharing there was a gap that needed to be filled: a way to deliver structured, updated and relevant information to patients and families.

This need led to the inaugural issue of a newsletter, which will be published biannually. Read more

Literature about EB

"Julie’s butterfly": A novel about EB, love and vulnerability

Cover of the novel "Julie's butterfly": Woman's portrait (beautiful woman with long brown hair) and a butterfly

Novelist Greta Milán tells a delicate story about the young woman Julietta falling in love with Bastian, who lives with EB: When attractive Julietta first meets aloof photographer Bastian, she has butterflies in her stomach. She soon finds out that the young man lives with a rare genetic skin condition that makes his skin easily break at the slightest touch. Bastian has had a lot of pain and rejection, and while his thoughts are full of self-doubt, Julie tries to get through to him and win his trust. Read more

DEBRA International is the umbrella organisation for a worldwide network of national groups, working on behalf of those affected by the rare genetic skin blistering condition epidermolysis bullosa (EB).

DEBRA International Executive Committee 2015/2016
Cinzia Pilo (Italy) – President; Loreto Moore (Chile) – Deputy President; Shoaib Gopalani (Canada) – Treasurer; Brett Kopelan (USA) – Deputy Treasurer; Jimmy Fearon (Ireland) – Secretary; Anna Kemble-Welch – Deputy Secretary; Mia Werkentoft (Sweden); Michael Jaega (UK); Vassil Nikolov (Bulgaria)

Internal Auditors
Graham Marsden (UK); Rainer Riedl (Austria)

Staff
Michael Fitzpatrick (Australia) – CEO; Lea Prujean (New Zealand) – International Coordinator/ EB Without Borders; Clare Robinson (seconded by DEBRA Austria) – Head of Research; Avril Kennan (seconded by DEBRA Ireland) – Project Manager/ Clinical Practice Guidelines; Barbara Dissauer (seconded by DEBRA Austria) – Communications and Research Manager; Hayley Epps (seconded by DEBRA UK) – Communications Manager; John Dart (voluntary) – Senior Advisor to the Executive Committee

DEBRA International is a registered charity: ZVR 932762489

Contact: Am Heumarkt 27/1 | 1030 Vienna | Austria | Tel: +43 (0)1 876 40 30
e-mail: office@DEBRA-international.org | www.debra-international.org
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