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The World Endometriosis
Research Foundation is the first global charitable
organisation with an aim to foster research
into endometriosis to improve knowledge and
treatment(s) of this enigmatic disease.
Endometriosis
affects tens of millions of women around the
world, yet its origin is poorly understood,
most treatments have side effects, and there
is no cure. Endometriosis is commonly associated
with infertility and pain in women. The symptoms
can leave a woman unable to finish an education
or maintain a career and have a significant
effect on her quality of life as well as a substantial
socio-economic impact.
The Foundation will achieve
its aim of fostering research by providing a
platform to attract sufficient funding from
a variety of sources to:
- Facilitate and carry out
large scale international multi-centre trials
involving sufficient patient numbers to provide
results of statistical significance;
- Support specific research
projects investigating disease mechanisms.
An early deliverable will
be the establishment of a global research registry.
Says founding
trustee Professor Robert Schenken: “The
ASRM, ESHRE and WES have recognised the lack
of large scale international clinical trials
in endometriosis, the lack of overall funding
for research into the disease and, not least,
the potential overlap of effort from country
to country when centres work in isolation and
can’t share data.
This collaboration will allow us to share vital
resources within the endometriosis community
and work towards improving our knowledge about
prevention, early diagnosis and treatment”.
The Foundation
is a registered charity in the United Kingdom,
but will operate globally. Its board has representatives
from all three founding organisations, with
the first board comprising:
Professor Robert Shaw (United Kingdom) –
president
Professor G David Adamson (USA)
Professor Thomas D’Hooghe (Belgium)
Professor Linda Giudice (USA)
Dr Stephen Kennedy (United Kingdom)
Professor Robert Schenken (USA)
Dr Martyn Stafford-Bell (Australia)
Professor Carlos Sueldo (Argentina)
The board
has appointed Lone Hummelshoj as Chief Executive.
It is possible
to make donations to endometriosis research
via the Foundation’s website:
www.endometriosisfoundation.org
NOTES TO EDITORS:
1.
Endometriosis is a condition where
tissue, similar to the lining of the uterus,
is found in other areas of the body (mainly
in the abdominal cavity). This tissue responds
to a woman’s hormonal cycle. However,
unlike blood in connection with the period,
it remains within the body, where it bleeds
and forms lesions, blood-filled cysts, and adhesions,
resulting in inflammation, pain, infertility,
and potentially other medical problems. Symptoms
include: Painful menstruation, ovulation, intercourse,
bowel movements, urination; fatigue; bloating,
nausea, heavy bleeding; sub-fertility; and possibly
a susceptibility to develop other diseases,
including certain cancers. Treatments include:
painkillers, birth control pills, hormones,
surgical removal and, for some, hysterectomy.
For most women, side effects are associated
with all of these treatments, and none of them
cure the disease. See also: www.endometriosis.org/endometriosis.html
2.
The American Society for Reproductive
Medicine (ASRM) was founded in 1944
as a multi-disciplinary society to help form
key legislation and fight for reproductive rights
when public policy in reproductive matters did
not exist. Since 1950 it has published Fertility
and Sterility, and it also produces guidelines,
minimum standards, committee opinions, and technical
and educational bulletins. See also: www.asrm.org
3.
The European Society for Human Reproduction
and Embryology (ESHRE) was founded
in 1985 to promote the study and treatment of
reproductive biology and medicine. It promotes
research, organises education and advanced medical
training activities, and publishes Human Reproduction.
See also: www.eshre.com
4.
The World Endometriosis Society
(WES) was founded in 1998 to foster research
and promote the exchange of clinical experience,
scientific thought and investigation among gynaecologists,
endocrinologists, scientists, biologists and
other qualified individuals interested in advancing
the field of endometriosis. See also: www.endometriosis.ca
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