Number 54 • January 2015

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Network News

Acquired Deafblindness Network

Liz Duncan


CHARGE Network

Andrea Wanka

Tel: ++496251939797

Fax: +4916090309876

Communication Network

Ton Visser


Employment Network

Diana Bonilla Sinibaldi

Tel: +(502) 52089291

Fax: (502) 24347934


European Deafblind Network

Ricard Lopez Manzano

Tel: +34-678-712-619

Fax: +34-678-782-600



Latin America Network

Sandra Polti



Outdoor Network

Joe Gibson

Tel: 4+4 (141) 429-0294


Rubella Network

Joff McGill;

Siblings Network

Sabine Kersten

Tel: +32 476 612 879


Social-Haptic Communication Network

Dr. Riitta Lahtinen & Russ Palmer

Tel: + 358 40 522 4201


Tactile Communication Network

Bernadette Van den Tillaart

Tel: +1-740-426-6728

Fax: +1-740-426-6728

Usher Syndrome Network

Emma Boswell

Youth Network

Simon Allison

Tel: 0044 7798 882 496


DbI Youth Network (DbIYN)

Simon Allison reports:

The Youth Network publication ‘A Glimpse of Our World’ has now been published. This is a collection on eighteen inspirational stories from deafblind young people from around the world. Each story highlights how culture, heritage and service provision influence the lives of deafblind youth. There are some wonderful heart-warming stories featured in the book that provide a unique insight into how young people overcome the many challenges they face. Stories feature from countries including Romania, Malawi, USA, Scotland and Norway. To order a copy please email the youth network coordinator

Members of the ‘GOT 2 Act’ drama group were delighted to participate in the recent ADBN conference in Belfast. ‘GOT 2 Act’ is a deafblind youth drama group from England who are members of DbIYN. The group have written and produced a play about the early life of Helen Keller. The group have been practicing since June and this was demonstrated in the professionalism of the performance in Belfast. The cast also experienced some of the workshops on the opening day of the conference and made many friends with the delegates.

The Youth Network coordinating group are busy planning an activity for Network members that will take place in 2015. The activity will also include a half day of workshops delivered by young people. Further announcements will be made soon about booking arrangements for the activity.
For more information contact Simon Allison (
Watch for activity on our new site on the DbI website:

CHARGE Network

Andrea Wanka reports:

German CHARGE Conference

The 8th international German CHARGE conference took place July 03 – 06, 2014 in Oberwesel, Germany, hosted by the German CHARGE group.

Prior to the main family conference, a professional focused preconference featured such participants as Dr. David Brown (USA), Prof. Dr. Tim Hartshorne (USA), Gail Deuce (UK), Dr. Kim Blake (Canada) and at the main conference also Prof. Dr. Conny van Ravenswaij (Netherlands).

Before the conference, a youth weekend was organized and a film featuring youth and young adults with CHARGE was produced. This was presented during the conference by the youths and young adults. See

Nordic Network of CHARGE syndrome

Newborns with CHARGE syndrome frequently need intensive care services and many of them undergo surgeries as infants. As soon as the children are in a stable medical condition early intervention services should be initiated by a multidisciplinary team. For those children with deafblindness, coordination of the visual and auditory aids is essential. Due to the rare occurrence of CHARGE syndrome, parents, teachers and other professionals have limited knowledge about it. Therefore, networking and centralisation of services and knowledge is of utmost importance. The Nordic Network of CHARGE syndrome has been operating since 2002. It is organized by the Nordic Centre for Welfare and Social issues (l under the category of deafblindness. Within the Network each of the five Nordic countries (Denmark, Finland, Iceland, Norway and Sweden) is represented by one or two professionals who are active locally in the deafblindness field. The purpose of the Network is to collect, share and spread knowledge on the syndrome within the Nordic countries. The Network focuses on the educational needs, psychological consequences and behavioural aspects of the syndrome. The national representatives meet every year and share knowledge and experience around a certain theme – for instance tactile sense and communication, social aspects of the syndrome and pain. Iceland was the last country to join the Network. As the Icelandic population is small such cooperation is very important. The Nordic Network has already stimulated local networking in Iceland and sharing of information and knowledge among professionals and parents of children with the syndrome.

Prepared by Solveig Sigurdardottir (Email address:

Responsibility for CHARGE Syndrome in Norway

In Norway the responsibility for CHARGE syndrome is now located at the Frambu Center For Rare Diseases ( See detailed article about Frambu in this edition.
For more information, please contact Andrea Wanka:
Watch for the new CHARGE Network subsite on the DbI website:

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