This is the first
time that the EU has provided funds for work
in the field of endometriosis and is the result
of several years of awareness raising in the
European Parliament and European Commission
by the European Endometriosis Alliance.
The partners in this project,
which is the first of its kind, are:
- Oxford University (UK)
- Leuven University (Belgium)
- Catholic University of Rome (Italy)
- Hospital San Carlo (Italy)
- Endometriose Foreningen (Denmark)
- Endometriosis UK (UK)
- TNS Social Research (UK)
- Endometriosis.org (Global)
This coalition, bringing physicians,
women with endometriosis and professional organisations
together, will be working over the next 3 years
to address three main areas of work, beginning
with a pan-European quality of life study.
The research aims to engage
10,000 respondents across participating countries
in understanding the impact of endometriosis
and will also include vital socio-economic data.
The second part of the project
will be to create an Internet based Endometriosis
Community Gateway which will be the first port
of call for anyone wanting information about
endometriosis (including the public, health
professionals and employers) and guiding them
to where they can best find the information
they seek.
The final element is the development
of a clear strategy for supporting the 14 million
women across the EU battling with endometriosis
and to strengthen the European Endometriosis
Alliance. The grant will enable the European
endometriosis charities, many of whom have very
little or no funds, to develop their own work
as well as create a more powerful European group.
Rob Music, chief executive
of Endometriosis UK, which is the lead partner,
says:
“While there have been
some improvements in the diagnosis and funding
of endometriosis there is a still a long way
to go. It is simply unacceptable that millions
of women across Europe continue to live with
an illness stagnating as a result of misunderstanding
and inadequate levels of funding. We are delighted
and thankful for the recognition of this need
by the EU through this grant which should make
a great difference at so many levels”
Lone Hummelshoj, who has campaigned
for the past four years for more funding in
Europe, expressed her delight at the grant:
"A lot of work in getting
endometriosis officially recognised by the European
Union has now paid off. Hopefully, this grant
will only be the beginning of serious funding
into raising awareness of endometriosis, and
to obtain investment for causal research into
the disease. Causal research
may help develop treatments that actually work,
and which subsequently will preserve these women's
fertility, improve quality of life, and reduce
socio-economic costs. We are not there yet.
But this is an excellent start!"
|
