The end of the congress; a brainstorming session

directed by Graham Marsden (UK)

The congress came to creative break-up; collecting the ideas and suggestions of the congress-participants before turning home. Directed by Graham Marsden, a lot of advices were gathered for the Future of DEBRA International.

Remarks and suggestions

Guidelines:

  • Guidelines, like the now published best practice guide for dental care in EB and occupational therapy are a very good initiative, asking for more; guidelines for other aspects related to the care for EB .Still, it is complicated to ask physicians, nurses and other EB-experts for their experience and co-operation, if in the countries where they do their work, very few EB-patients are registered.
  • International contacts, thanks to new communication-technology, is growing and getting more intensified. It also strengthens the need to have more best clinical practice guidelines, but those initiatives costs a lot of time, energy and money. (The guideline dental care:  15.000 euro). It can be a possibility for DEBRA International to undertake fundraising for these guidelines. DEBRA UK has a fund to finance guidelines like this. Belgium and Australia were also prepared to give financial support.
  • A best clinical practice guideline related to nutrition and EB and EB and cancer is getting prepared. A nice side-effect while composing guidelines is the integration of the knowledge of all experts and the findings coming out of literature-research.
  • Ideas for other guidelines: Eye-care, Psychological- and social aspects in the life of EB-patients, Quality of life and EB.
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Other subjects:

  • Another very important issue is the co-operation of the DEBRA-members here present in the data-base, developed by Lotus Tissue Repair INC.
    Of course a reliable data-base is also convenient according to commercial aims and targets, but, being able to show reliable data, the chance to get more funds, is growing.
    Research to reach a definite therapy for EB will ask for a lot of money, and therefore reacting positive at the offer of this company and deciding to participate will sure be a situation in which both parties can gain.
    If the data-base is completed, there are more possibilities to attract scientists and researchers.
  • Results and findings from research as presented in the case of revertant mosaicism should be made accessible for everyone.
  • Smaller countries like f.e. Columbia are getting support of DEBRA International; this institution paid for hotel and tickets of the Colombian members .Maybe DEBRA International can help some other small countries too in supporting the organization of workshops in these countries, and inviting experienced DEBRA-members to manage these meetings.
  • A country like Romania also needs a lot of help according to the start and developing of a DEBRA- Romania. DEBRA International has a fund to support initiatives like this if accompanied with a good proposal. A team of EB-experts could travel to Romania to give suggestions and advices. This seems also to be a good idea for small countries like Colombia.
  • For the Japanese, Spanish, Italian, Portuguese and French delegates handling all the presentations in the English language is not an easy job. Besides Chinese and English, Spanish is worldwide the third on the list of the most spoken languages. Hopefully there is a possibility next congress to hire some interpreters to help all the Spanish speaking members.
  • The lack of money is the reason for DEBRA Japan not being able to translate the best clinical practice guidelines in the Japanese language; maybe DEBRA International can give some financial support to solve this problem.
    In Japan a special DEBRA- Asia EB congress will be organized. The question is of DEBRA International can participate here too.
  • Sometimes the lack of money is not always the main problem. There is also a great need for practical help and advice from people who really can offer help and support.
    It should be possible that the larger DEBRA's share their experience with the small or just starting DEBRA's.
  • Would it be useful to ask members to function as a kind of regional managers in continents as Africa and Asia. Both continents are very under-represented in international EB-meetings.
  • Can it be a good suggestion to ask grownup EB-Patients to lobby for more co-operation and sharing information?
  • The situation for people with EB in South-America is, comparing to a lot of western countries, quite different. This continent encloses a lot of pour countries, and is frequently dependent of the surgical expertise of other c countries.
  • To organize the next international DEBRA congress it would be convenient if all the here present DEBRA's would approach their own sponsors and ask them to give some financial support for these kind of international meetings.
  • The next congress should invite EB –youngsters and grown-ups like Humphrey Hanly, Mattija Zmazek and Bor Verkroost to tell more about the psychological and social aspects of EB; What about guilt ? Do EB-youngsters and their parents feel guilty to each other?  (They do, as is known)  But why?
  • The online EB-Community does not function at all. So the best way to communicate with each other remains; e-mail, tweets, hyves etc
  • Composing this Congress-special, it became known, that the next international DEBRA meeting will take place in  Toronto; September 13-16. (Canada)

And after that…we hope that you all had a nice journey home!

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