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Endometriosis Support Group NEWS

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The next awareness Week is 2- 8 March 2009

 

Endometriosis New Zealand launches new website for teenagers
MARCH 2008: Endometriosis New Zealand has developed a "funky and hip" new website specifically to answer questions from teenagers about endometriosis. It includes videos providing expert advice and stories from teens themselves.

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!

New Endometriosis Support Group launches in Singapore
JANUARY 2008: Azeeza Jalaludeen has launched the "SHINE Endometriosis Association" in Singapore to reach out to women in her country and beyond.

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.

Ellen T Johnson Foundation established to support women getting specialist care
NOVEMBER 2007: Endometriosis advocate, Ellen T Johson, died on 11 November. The ERC has established a fund in her name to enable women with endometriosis to receive specialist care.

Deborah Bush honoured by Paul Newman's Own Foundation
NOVEMBER 2007: Endometriosis New Zeland Chief Executive, Deborah Bush, has been honoured as a Paul Newman "unsung hero" with a grant of $10,000 towards the ENZ adolescent endometriosis programme, Me.

ERC announces winner of Nancy Petersen RN Nursing Scholarship
AUGUST 2007: The ERC is extremely pleased to announce that Mary Zipperer of Wisconsin has been selected as the winner of the ERC Nancy Petersen, RN Nursing Scholarship for the 2007-2008 academic year.

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.

Thousands of women gather in Sao Paulo for Brazil's first awareness campaign
MARCH 2007: The 1st Brazilian Endometriosis Awareness Campaign saw 2,500 women come together to meet with 45 Brazilian physicians to learn more about appropriate treatment for endometriosis.

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?

Japan Endometriosis Association announces significantly adverse effects of GnRH-a use
MARCH 2007: The Japan Endometriosis Association (JEMA) conducts a national survery every five years to assess the effect of treatments for endometriosis. 2007 results have just been published.

European Parliament Seminar to highlight socio-economic impact of endometriosis
MARCH 2007: MEP Diana Wallis, ESHRE, the Europan Endometriosis Alliance, and the World Endometriosis Society will call for investment into causal research in endometriosis at a symposia in the European Parliament on on 28 March 2007 >> EMAIL US for more information on how to get involved

Nurse scholarhip announced by the ERC
MARCH 2007: The Endometriosis Research Center kicks off Endometriosis Awareness Month with a national honorary award: The Nancy Petersen RN Nursing Scholarship.

Endometriosis Research Center (ERC) celebrates 10 years
MARCH 2007: In celebration of their 10th anniversary and Endometriosis Awareness Month, the ERC will be engaged in many events throughout March to continue their work on raising awareness about endometriosis and providing education, research facilitation, and patient support to the global endometriosis community.

African Infertility Alliance (AIA) has been launched
JANUARY 2007: An initiative of iCSi International Patient Leader Community, the AIA is the result of the tremendous efforts by JOYCE Fertility to bring together the countries of Uganda, Kenya, Zimbabwe and Israel to share issues concerning infertility in their respective countries.

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

New Endometriosis Support Group formed in Northern California
OCTOBER 2006: Asupport group for women who suffer with endometriosis has been formed in the Contra Costa County in Northern California, USA.

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.

Endometriosis Association Queensland has new patron
OCTOBER 2006: The Endometriosis Association (Qld) Inc is proud to announce Dr Susan Treloar as its new Patron.

Endometriosis Research Centre appoints new director of awareness programme
OCTOBER 2006: The ERC has appointed Erin Blakeborough as the new Director of their awareness programme. Erin is a long-time volunteer, who has contributed extensively to the ERC’s legislative and general awareness campaigns.

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!

ERC's centralised, revamped awareness campaign now underway
JUNE 2006: The ERC have centralised and revamped their various awareness campaigns under one program, in order to streamline and revitalise their efforts. Join them to make a difference!

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.

2nd Quarter Newsletter available Associacao Brasileira de Endometriose [PDF in Portuguese]
MAY 2006: ABEND - Associao Brasileira de Endometriose publishes a newsletter packed with articles and a great summary from the recent Brazilian Endometriosis Congress.

Webcast from the Endometriosis Association's 25th Anniversary Conference [PDF]
APRIL 2006: The webcast offers video coverage of the latest research, surgical, clinical, and patient information from the EA's anniversary conference in October 2005.

Endometriosis de Puerto Rico has successful first meeting
MARCH 2006: Senator Lucy Arce, president of the Puerto Rican Senate Health Comission, attended the first ever gathering of 400 women with endometriosis in Puerto Rico.

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!

More progress made by the the Italian Endometriosis Association towards their legislative awareness campaign
OCTOBER 2005: The Associazione Italiana Endometriosi was received at the Italian Senate for an audience as part of the investigation currently underway on the issue of endometriosis as a social disease.

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 questinnaire, which showed an average diagnostic delay of 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.

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!

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.
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Endometriosis - una visión multidisciplinaria para médicos, pacientes y familiares
JUNE 2005: This first ever original book on endometriosis in Spanish is published by La Asociación Endometriosis Espana and features chapters on all aspects of endometriosis written by prominent Spanish doctors in collaboration with women with endometriosis.

Endometriosis Association (Victoria) celebrates 21 years
APRIL 2005: A reflection on the EAV's ‘life’ to date, with insights into their main achievements and their impact.

Meetings with the European Parliament and the European Commission
MARCH/APRIL 2005: Representatives of the European Endometriosis Allliance 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.

Endometriosis Awareness 2005
MARCH 2005: Support groups make headlines during Endometriosis Awareness Week.

Associação Portuguesa de Endometriose launched in Portugal
DECEMBER 2004: Ana Cristina Chaves launched the Portuguese Endometriosis Society in December 2004 with support from Portuguese gynaecologists.

European Endometriosis Alliance Founded
OCTOBER 2004: 19 representatives (from 12 endometriosis support organisations in 11 countries) met to form the European Endometriosis Alliance.



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