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Among
the projects are:
Part-time
specialist EB nurse
Funding of a part-time specialist nurse to give support and
advise to all EB sufferers in New Zealand. The nurse will
also to be available to provide expert postnatal care for
new babies born with EB. It is important to note that a parent
has no forewarning that their baby may be born with EB, and
it is highly unlikely that attending medical professionals
will have experience or expertise in dealing with EB.
A life-experience
camp:
Organising a camp in New Zealand for EB sufferers in the Oceania
region, at either Outward Bound or the Outdoor Pursuits Centre.
National conference: Hold a national conference for EB families
and the medical fraternity and bring to New Zealand leading
medical specialists to share recent developments in research
and the treatment of EB abroad.
USA
skin disorder camps:
Send each of our EB children to a camp. Every year, members
of the American Academy of Dermatology organise summer camps
in the USA for children with rare skin disorders where specialist
dermatologists are on-hand to assist and advise the children.
The camps are a rare opportunity for children to spend time
with others of a similar age and condition.
Contribution
to international research:
The most promising potential remedies for EB seems to lie
in the field of research. The UK and the USA has recently
agreed to co-ordinate their EB research activities. At this
stage NZ is not involved, but as a medium-term goal DEBRA-NZ
aims to build sufficient funds to make a positive contribution
to research efforts to find a cure.
Annual
DEBRA International Conference:
Every year DEBRA groups around the world meet to share ideas
and information. It is important for EB sufferers in New Zealand
to be part of the global EB network to share in new research
and developments in EB care.
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