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International Federation for Spina Bifida and Hydrocephalus
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Former conferences
The main annual IF event is the yearly conference. People with spina bifida and hydrocephalus and their families come together from all over the world to exchange knowledge and examples of good practice.

The following conferences have been held since the inaugural meeting.

2008    Lisbon                 Drawing Smiles - Towards Adulthood
2007    Kampala              Tomorrow
2006    Helsinki                Access
2005    Minneapolis          Building Bridges to Advance Understanding
2004    Oslo                    Crossing borders
2002    Lublin                  You are my World
2001    Dar es Salaam      Against all odds
2000    Toulouse              The right to be different
1999    Perth                    A future with purpose - A future with choice
1998    Washington          Celebrate the past, envision the future
1997    Bonn                    It’s about me
1995    Sydney                 Fast forward into the future
1993    Deinze                 Wait a minute
1991    Stockholm            Together is strength
1989    Antwerp                Live your life
1987    Denver                 Climb every mountain
1985    Manchester           Making our way
1983    Malaga                 Incontinence
1981    Dublin                  Inde­pendent living
1979    Stockholm            The family situation


About 800 people gathered in Minneapolis, MN, USA for the 32nd Annual Conference of the Spina Bifida Association of America and the 16th International Conference of the International Federation for Spina Bifida and Hydrocephalus. The conference hosted many activities, among which conference sessions, an adult day, a kids’ camp, sessions for health care professionals, volunteers and many more.

Participants to one of the many sessions

The sessions addressed specific topics that parents, children with or without spina bifida, teens, adults and professionals have to deal with in their daily lives. Some of the most interesting sessions dealt with the development work by Tom Baroch in Guatemala, the scientific research on endoscopic surgery done by dr. Ben Warf (for which he received the IF award, cf. infra) and the member information sessions on the changing environments for non-profit organisations. There was a lot of informal contact during the several breakfast, coffee, lunch and dinner breaks allowing participants to share and learn from each other.

Welcome by Pierre Mertens

"Welcome to the 16th International conference for spina bifida and hydrocephalus, the third world conference hosted by the SBAA. In the USA we have held conferences in Denver (1987), Washington DC (1988) and now in Minneapolis," said IF-president Pierre Mertens.

Read the whole speech.

IF award 2005: dr. Ben Warf
Dr. Ben Warf

Each year, the Federation presents the IF-Award to an individual or organisation in recognition of the special contribution they have made in the service to people with disabilities in general or to people with Hydrocephalus and Spina Bifida in particular. By unanimous decision of the IF international board, it has been decided that the IF Award for the year 2005 will be offered to Dr. Ben Warf. Read the press release here.


2004 was a good year for the International Federation for Spina Bifida & Hydrocephalus and its members. The highlight was the 15th International Conference on Spina Bifida & Hydrocephalus, held in beautiful Oslo from September 2-4.

This conference was organized by IF and the Norwegian Association for Spina Bifida and Hydrocephalus (Ryggmargsbrokk- og Hydrocephalusforeningen)

The theme was “Crossing Borders” and crossing borders we did!! There were 226 delegates from 27 different countries and for the first time, the participation of adults was so visible, it was amazing!!
After the conference, there was a special workshop for adults only, with themes connected to adult life.  A lot of new contacts were made and people were communicating and forging strong bonds. Everybody became stronger after the Oslo experience.

The program was set up in such a way that information from all over the world was spread out over the two day period, thereby allowing people from different continents to exchange views and thoughts based on what they had seen and heard.
The video show “Living with Spina Bifida in Norway” must have been an eye-opener to people from developing countries until they saw “Tales of Hope”. The latter video shows that even though people in the North have certain advantages, people in the South are not forgotten and that there is hope.

One of the most memorable presentations was made by Dr. Ben Warf on the use of the new ETV technique which is used more in the South (Uganda) than the North.

All delegates were invited to a reception given by the Oslo Municipality in the Town Hall overlooking the harbor.

On Saturday evening IF presented a Gala dinner in celebration of its 25th anniversary. It turned out to be a very lively event with lots of speakers, Norwegian singers, dancing and strengthening the contacts that were made during the conference.

IF  also held its General Meeting where a new 9 member Board was elected. The new members are:
Mr Pierre Mertens President
Mr. Aloysius K. Bakkidde Vice President
Mr. Trevor Capps Treasurer
Mr. Teije Dijk Member of the Board
Ms. Cristina Isabel Pavisic Member of the Board
Mr. Jon Burke Member of the Board
Ms. Renée Höglin Member of the Board
Mr. Luís Quaresma Member of the Board
Ms. Cindy Brownstein Member of the Board

We would like to thank the Norwegian Organization and IF for doing such an excellent job in organizing this big event. The hotel facilities were such that all people were able to move about without any problems. Catering was abundant and it is rumored  that salmon prices were on the rise again after we had this delicacy for breakfast, lunch and dinner.
We are all looking forward to next year’s conference, to be held in Minneapolis, Minn, USA.

YOU ARE MY WORLD, Lublin 2002

In 2002 IF held its world conference in Poland with the theme ‘you are my world’ (see introduction).
It was the first time the International Federation for Spina Bifida and Hydrocephalus (IF) had organised its conference in an eastern European country. 

‘You are my world’ focused on the influence ‘the others’ have in the process of inclusion of people with Spina Bifida and/or Hydrocephalus in society.

Who are the others? Parents, friends, relatives, family, neighbours, the people of the village, colleagues at work, the school, medical professionals, society in general..

Society however has an influence on the opportunities for a person with Spina Bifida and/or Hydrocephalus in his fight for inclusion. Solidarity with people with disabilities is essential to overcome barriers of discrimination and social exclusion. 

Poland with its rich history was an excellent venue for our 2002 conference. Moreover, the Polish Association for Spina Bifida & Hydrocephalus (ASBP), in recent years has proved to be a fast expanding and active association. The association was founded in 1994 and has now 10 local groups all over Poland totalling more than 550 members. The dynamic involvement of the ASBP Board members made this conference a success reaching far beyond the Polish borders.

As an example of good practice in international cooperation the successful co-operation between Dr M Vloeberghs (UK & B) and Dr J Rogon (P) on Third Ventriculostomy treatment of Hydrocephalus in Gdansk was presented.

ASBP arranged an excellent social evening.  Differences in culture, language or religion are never a problem at these events and there are always many issues to talk about and experiences to share. Many thanks to the ASBP for a successful conference.

AGAINST ALL ODDS, Dar es Salaam 2001

For the first time and following so many eventful years of challenging project development, the international conference for spina bifida and hydrocephalus was organised in a developing country. Against all odds, it was a resounding success and in so many ways.
Not only the actual conference - which was attended by some 112 people from 18 different countries - was the long envisaged success; adults, parents, doctors and other professionals all gained from exchanging their experiences.

The pre-conference days were of a very high standard. The Fieldworkers Day on Wednesday and the Parents Day on Thursday were both very well attended by many people from Tanzania and from abroad. The afternoon at the seaside with the families from Dar es Salaam will be a memory held dear by many. A thank you to Augusto Zambaldo for the organisation of these two days.
On a medical level, Dr Ben Warf organised an Endoscopic Third Ventriculostomy (ETV) workshop, to both introduce the use and first successes of ETV in children with hydrocephalus. These results were also shared with the audience during the main conference itself. It was on Thursday the 27th September that the introductory workshop on ETV was organised in the Disability Hospital in Dar es Salaam with Dr Ben Warf taking responsibility for organising this in cooperation with Dr Kinasha. The workshop was very well attended by professionals from several different levels. Dr Warf began by presenting the technique and the equipment. In a second phase, he reported on his personal experiences of 3 months use of ETV in the Children’s Hospital of Mbale. One truly remarkable result is that ETV can be used in post-infectious hydrocephalus cases, which is very important for work done in developing countries as a major part of the hydrocephalus cases are indeed post infectious. Dr Warf stated that ETV should be the first option for treatment of hydrocephalus in developing countries. He presented also a comparative study of the use of the Chabra shunt compared with the Codman shunt. The results were not significantly different so he could conclude that the use of the Chabra shunt is an excellent alternative to the expensive American shunts. Dr Warf shared these results also during the main conference. The lectures are available from the if office upon request.

The against all odds conference
The actual conference (28 & 29 September 2001) was attended by 112 participants from 18 different countries. 10 out of 18 countries were developing countries and the majority of participants were people working in projects in developing countries. The conference was officially opened by the Honourable Minister for Health of Tanzania, Mrs Anna M. Abdallah.
As regards the first day of the conference, the programme was focused on the people at the end of the chain: the children, parents and adults with hydrocephalus and spina bifida. Many testimonies from people with these conditions were shared with the audience and Tina Oneko, paediatrician in the CBR Kilimanjaro region, reported on the value of support groups for parents and the first successes in the Kilimanjaro region. The second day of the conference was more focused on medical issues on several levels. Dr Ben Warf reported, as mentioned previously, on the first results of Endoscopic Third Ventriculostomy (ETV) in hydrocephalus patients in developing countries - and his results were remarkable. Dr Buyse and Dr Verpoorten gave a lecture on the applications of urological care and continence management in developing countries. Many discussion groups and spontaneous workshops took place during and after the conference, which shows precisely the need for professionals in order to ensure continuous information flow and exchange of experience. The International Federation for Hydrocephalus and Spina Bifida will keep on focusing on the importance of this process of continuous exchange of experience and information between professionals and also on the training of professionals at all levels in projects in developing countries.

This conference was also an opportunity for IF to show and go into depth about the if projects in developing countries with our members and partners. By showing what we are doing in the IF projects, we hope that our members will be spurred to further support our work in developing countries and we hope that new initiatives for financial support for our work will thereby be generated and be very much forthcoming. We thank the participants, the lecturers and all the project representatives for their active involvement in this event.

We especially thank the whole CCBRT team for their professional cooperation in organising the main conference and the CCBRT Disability Hospital for their willingness to have the pre-conference days organised in the hospital buildings itself. And of course we thank our donors whose generous contributions made it possible to fund a considerable part of this event so that we could focus on reaching out to the people who could benefit most from it. Again many thanks!

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