European Endometriosis Alliance

The European Endometriosis Alliance (EEA) was founded in October 2004, where 19 representatives from 11 European countries* met for two days to agree on an action plan to collaborate and to provide an open and pro-active base from which to help and support the estimated 1 in 10 women who suffer from endometriosis.

The EEA is an umbrella organistion for national endometriosis support organisations in Europe.

EEA

The European Endometriosis Alliance at the inaugrual meeting, Milano 2004

The EEA’s vision is a day where no woman is crippled by endometrioisis nor prevented from having children because of the disease.

Therefore, the EEA’s mission is to:

  • increase awareness of endometriosis, its symptoms, effects and treatment options
  • ensure that all health professionals understand what endometriosis is, its symptoms, effects and treatment options.
  • ensure that all women have ready access to timely diagnosis, appropriate treatment, care and support
  • make endometriosis a high priority, with appropriate funding, in bio-medical research.
    The EEA’s goal is that the next generation of women will not be at risk of having their lives compromised by endometriosis.

The EEA has a joint Endometriosis Awareness Week during the second week of March every year.

Milestones

AIE Milano group has launched a creative competition
MARCH 2009: The Associazione Italiana Endometriosi (AIE) Milano group has launched a creative competition entitled “Endometriosis, what I KNOW about me”, to raise awareness of endometriosis from the point of view of those that live with the condition.

Associazione Italiana Endometriosi (AIE) and Italian Health Ministry launch information campaign
FEBRUARY 2009: After years of lobbying by the AIE the Italian Healthy Ministry has launched a national campaign “What I don’t know about myself” to raise awareness of endomtriosis.

New support group is launched in Switzerland
FEBRUARY 2009: Selbsthilfezentrum has launched in Switzerland and has embarked on their first poster campaign to raise awareness of endometriosis.

New support group is launched in Poland
JANUARY 2009: Stowarzyszenie Endometrioza has launched in Poland as a national charity to support women with endometriosis.

Finnish Endometriosis Society shares 2008 highlights
DECEMBER 2008: Endometrioosiyhdistys has had a progressive year in 2008 and are now busy preparing for their 10th anniversary in 2009.

Endometriosis UK raises more than £8,000 in the London Marathon!
APRIL 2008: Endometriosis UK was granted its first place in the 2008 London Marathon, where runner, Neil Kelly, raised more than £8000 for the charity!

Press Conference by AIE and SIGO launches Awareness Week in Italy
FEBRUARY 2008: The Associazione Italiana Endometriosis (AIE) in collaboration with the Italian Society of Gynaecologists and Obstetricians (SIGO) held a press conference in Rome on 26 February to officially launch Awareness week.

Endometriosis UK has been granted its first place in the London Marathon
FEBRUARY 2008: This is an opportunity to push endometriosis into the public eye and generate much-needed funds to raise further awareness of this debilitating disease. Please support runner Neil Kelly!

Associazione Italiana Endometriosi (AIE) shares its recent achievements and milestones
DECEMBER 2007: AIE has made tremendous strides in Italy over the past year. They share their achievements and milestones with everyone for inspiration and encouragement.

Associazione Italiana Endometriosi (AIE) returns to the Italian Senate
MAY 2007: Associazione Italiana Endometriosi (AIE) presents a proposal to the Italian Senate for a law to safeguard the rights of women affected by endometriosis.

European Commission grants funding for endometriosis work in Europe
MAY 2007: Historic funding from the European Commission provides encouraging news for millions of women whose lives are affected by endometriosis.

Associazioen Italiana Endometriosi (AIE) Onlus celebrates eight years of results
APRIL 2007: At its annual general meeting held on Saturday 14 April 2007 Associazione Italiana Endometriosi (AIE) celebrated the enormous progress it has made during the last eight years.

European Parliament brings stake holders together to tackle endometriosis
MARCH 2007: Legislators, clinicians, scientists and women with endometriosis in Europe came together in the European Parliament on 28 March to call for more investment into causal research.

First Endometriosis Support Group launches in Belgium
MARCH 2007: Belgian Endometriose Stichting launches on 10 March at a seminar at Leuven University Hospital, with support from the Dutch colleagues.

Endometriosis UK launches hard-hitting awareness campaign
MARCH 2007: Using a sub-theme of “what if”, the BLOODY HELL campaign asks how life would be if sex were so painful it became both a physical barrier and an intolerable strain on a relationship, and how you would cope if your social life virtually ground to a halt because of an illness?

New image and name for Endometriosis UK
NOVEMBER 2006: The National Endometriosis Society in the UK has changed its name to Endometriosis UK to sharpen the its image and to strengthen its branding, clearly identifying what the charity is about.

British Medical Association awards prize for endometriosis teenage booklet
OCTOBER 2006: The BMA have awarded their prestigious Patient Information Award for 2006 to the Endometriosis SHE Trust (UK) for their teenage information booklet.

UK National Endometriosis Society celebrates 25 years
JULY 2006: Ailsa Irving, who founded the NES 25 years ago, shares her memories of how it was to start a society in 1981 (before the Internet). This is wonderful reading, where lots of women are recognised for the early efforts of getting a national support organisation up and running!

New law in Spain allocates more money to investigate endometriosis
JUNE 2006: The Spanish Congress of Representatives has unanimously approved the allocation of more money to the fight against endometriosis following a proposal of law instigated by Asociacion de Endometriosis Española.

European Council conclusions for women’s health in Europe accepted by all Member States
JUNE 2006: The Council of the European Union has formally recognised the need that more attention is given to women’s health issues – and endometriosis is again highlighted as a disease which deserves specific attention!

New endometriosis support organisation started in Malta
JUNE 2006: The first meeting of the Maltese Endometriosis Society took place on 30 June 2006. Their next meeting is on 29 September 2006.

Endometriosis Awareness Week creates noise, light and hope!
MARCH 2006: National support groups were heard during Endometriosis Awareness Week, and had support in their efforts from the European Parliament.

Historic decision for women’s health made by the European Commission
FEBRUARY 2006: The EU’s move to include endometriosis in its Public Health Programme for 2006 could lead to better diagnosis, treatment and care for women with the disease.

Austrian Health Minister urges more awareness for endometriosis
JANUARY 2006: Maria Rauch-Kallat, Federal Minister for Health and Women in Austria will focus on women’s health, and endometriosis in particular, during the Austrian EU presidency in 2006.

Conclusion of investigation by the Italian Senate into endometriosis as a social disease
JANUARY 2006: This investigation has been an important step forward towards the official recognition of endometriosis, the need for improved therapeutic options, as well as economic aid to women with endometriosis. This a huge step forward for women with endometriosis!

Announcement of results from pan-European pain and quality of life study
SEPTEMBER 2005: The EEA translated this study into Danish, Dutch, English, Finnish, French, Norwegian and Swedish. 7,025 women with endometriosis completed the questionnaire, which showed an average diagnostic delay of over eight years, with 65% originally being misdiagnosed with another condition.

Endometriosis is highlighted in the European Parliament
SEPTEMBER 2005: Diana Wallis MEP highlighted the plight of women with endometriosis as part of a report on gender discrimination in health systems, which was debated in the European Parliament on 7 September 2005.

Written Declaration on Endometriosis
JUNE 2005: A targetted lobbying campaign by the EEA, along with physicians across Europe, resulted in 266 MEPs supporting the European Parliamentary Written Declaration on Endometriosis seeking a significant increase in funds and awareness in the EU for endometriosis. This is the highest number of signatures achieved for a health issue and the sixth most successful Written Declaration since 1998.

Associazione Italiana Endometriosis and Italian gynaecologists make history
JUNE 2005: Specialists in all areas of medicine, women with endometriosis, journalists, and legislators all came together on 22-25 June to focus on the disease as a social issue, not only as a medical one. On 28 June 2005, the Italian Senate voted in favour of the first act of the bill that will recognise endometriosis as a social disease!

Meetings with the European Parliament and the European Commission
MARCH/APRIL 2005: Representatives of the EEA met with members of the European Parliament and the European Commission to discuss the need for increased awareness of the disease and investment into research for the cause and prevention of endometriosis. These meetings led to the launch of the Written Declaration on Endometriosis.

Support groups across Europe make headlines during Endometriosis Awareness Week
MARCH 2005: Endometriosis Support Groups in Europe simultaneous arranged awareness and informational events in Austria, Denmark, Finland, France, Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Spain, Sweden, and the United Kingdom. The theme for Awareness Week 2005 was making a difference at grass roots level for women with endometriosis and those that care for them to play an active role in their communities. Never before have so many national support groups collaborated in raising awareness of endometriosis simultaneous – and it paid off!

Member organisations

If any national organisation is interested in joining the Alliance please contact the EEA.

* Austria, Denmark, Finland, France, Germany, Italy, Norway, The Netherlands, Spain, Sweden, United Kingdom. Ireland were unable to attend, but pledged their support to the Alliance immediately after the meeting. Portugal joined in March 2005 and Malta in June 2006.

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