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Overview DebRA Europe has national member groups in Austria,
Belgium, Bulgaria, Croatia, Czech Republic, Finland, France, Germany, Hungary, Ireland,
Italy (2), Netherlands, Norway, Poland, Portugal, Romania, Spain, Sweden, Switzerland, and
the UK. |
Contact is
maintained with national groups in Australia, Canada (2), Chile, Costa Rica, Hong Kong,
India, Malaysia, Mexico, New Zealand, Pakistan, South Africa and the USA.
A number of activities have been undertaken by DebRA
Europe (sometimes in conjunction with non-European groups under the badge of DebRA
International). These include:
- Common services and organisational development
- Annual conference
- Organisational development and fundraising workshops
- Translation of materials, e.g. Dutch Home Care Programme, initial leaflet for
parents
- Consultancy to individual groups using the expertise of other member groups
- Assisting new groups to establish themselves
- DebRA (International) website
- Research co-ordination
- Single unified peer review system for all DEBRA research grant applications
- Facilitation of funding for multi-national research projects from member groups
and foundations
- Consensus meetings
- Organisation or sponsorship of scientific meetings
- Lay research interest group
- Clinical/education
- Support for regional clinical conferences
- Professionals’ Forum
- Assistance in establishing EB clinics/services
- Assistance to training visits by clinicians to teach colleagues abroad
- Current proposal to establish Europe-wide diagnostic centres
- "Political"
- Contact with the European Commission and Parliament on issues of concern, e.g.
"orphan drugs", rare diseases programme, clinical trials directive
- Representation of European NGOs of people with rare disabilities in the European
Disability Forum and EAGS
- Applications for European Union funding
- Welfare
- Responding to enquiries from people with EB (usually via the website) about
matters of individual concern either by referral to the relevant national group or
directly where no group exists
- Providing individual advice or information at the request of the national group
- Exceptionally, providing material assistance to individuals in poorer regions
Priorities
A consultation exercise was carried out in
January/February 2002 amongst member groups to identify the most important functions of
DebRA Europe. Many responses indicated implicitly that all the activities detailed above
were important. However, where groups specified their priorities, research coordination
and the provision of common services were identified as the most important. Perhaps the
most significant finding was the willingness of member groups to pay a membership fee,
which has subsequently been adopted.
This consultation was followed by an extensive
discussion of priorities at the 2002 DebRA Europe Conference in London. The following
activities were defined as being the essential, core functions of DebRA Europe:
- Annual Meetings, alternating between conferences with scientific/clinical input
and workshops focusing on DebRA Europe development issues
- Revised Constitution
- International research coordination
- Establishment of robust communication, with named Executive Committee members
accepting responsibility for communications and research
- Monitoring of EU decisions/actions
- Professional forums and cross-border training.
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