Endometriosis Support Groups
support groups around the world from Endometriosis.org
The Endometriosis Forum
The OBGYN.net Endometriosis Forum has been created primarily for women and those affected by the disease to exchange ideas, personal experiences, referrals, product recommendations (barring commercial advertising), procedures, support groups, books, publications, etc.
The purpose of the quilt is to demonstrate the global implications of
endometriosis and to stand as a silent testament of the need for proper education to assist in a timely diagnosis of
this life-altering and crippling disease of women.
Endometriosis Group Argentina was founded by the Instituto Ginecologico Buenos
Aires in 1997 as the first support group for women with endometriosis in Argentina. Our group has a multi-disciplinary approach to endometriosis and have more than 600 members who have endometriosis. We arrange monthly meetings with the patients and coordinate these with a physician and a psychologist. Our target is the diffusion of endometriosis, the early diagnosis in the
women from teenagers to adult women.
Endometriosis Group Argentina
Av. Santa Fe 1675 2º A CP 1060
Capital Federal, Buenos Aires
t/f: +54 11 4815 4802
Oesterreichische Endometriose Vereinigung was founded in
Vienna in January 2003, and we have about 40 members.
We all suffer from endometriosis and we want to support the Austrian women with this disease. But we are more than a support group. We cooperate with doctors and therapists in the fight against endometriosis. Our target is also public relations to make endometriosis known in public.
Oesterreichische Endometriose Vereinigung
Obere Augartenstrasse 26-28
t: +43 (0)676 4447344
f: +43 (0)2236 866653
ABEND - Associação Brasileira de Endometriose
Rua Claro de Camargo Sobrinho, 89
Vila Pouso Alegre – Barueri
SP Cep 06402-050
t: +55 11 4198 7456
f: +55 11 4163 5086
Endometriose Foreningen Denmark
was founded in 1997 and provides advice, support, and information for women with endometriosis and their relatives. We work with national endometriosis specialists to increase awareness and understanding of the disease through countywide awareness campaigns and dedicated informational meetings in each of Denmark's counties.
Working closely with the National Institute of Health (Sundhedsstyrelsen), Endometriose Foreningen was instrumental in getting
specialist guidelines published, which states that endometriosis must be treated at dedicated centres of excellence – the first country in the world to have such guidelines.
We have developed a wide range of articles and literature on the disease in Danish, publish
four newsletters a year, maintain a website, and organise two national meetings
a year for women with endometriosis and their relatives. Endometriose Foreningen also provides specific materials for each gynaecological department in the country, which treats women with endometriosis.
Kvorupvej 1, Åsted
t: +45 2172 4300
f: +45 7525 4455
was founded in 1999 and was immediately met with interest and relief: it is vital to know that one is not alone.
We concentrate on providing advice and support via information material and several active, self-help discussion groups nation-wide. We also provide telephone support, maintain a website and publish a quarterly newsletter. We aim at a close collaboration with medical professionals and encourage all women to be proactive when living with endometriosis.
t/f: +358 (0)50 380 6715
17, allée des Eguerêts
F-95280 Jouy le Moutier
The Endometriose-Vereinigung Deutschland e. V. was founded in 1996 as a non-profit registered charity organisation. It is up to date the only self-help organisation for women with endometriosis in German-speaking countries such as Germany, Austria and Switzerland. We aim at supporting the self-empowerment of endo sufferers by way of information and exchange of experiences. Our work is also directed to induce or take part in research on endometriosis.
We provide a range of informational sheets, publish a newsletter four times a year and have established a website. We organise several small conferences and work shops throughout the year, with a special focus on the members meeting. The most important project in the near future is building up a helpline.
Since 1998 we have been able to assist women with endo in our counselling centre in Leipzig. If you wish to contact us in English, French or Russian please do so in written form (e-mail, fax or letter). The counselling centre will be helpful with any inquiries in German via phone.
Endometriose-Vereinigung Deutschland e.V.
Counselling centre Leipzig
t: +49 (0)341 3 06 53 04
opening hours: Monday to Thursday 9-12 am, Thursday 1-6 pm
The Endometriosis Society India was founded in 2004, and held its first
workshop on 23 April 2004. Their motto is "to serve the people who
Endometriosis Society India
6A & 6F Needlamber
28B Shakespeare Sarani
Kolkata 700 017
t: +91 (0)33 2240 4463 / +91 (0)33 2865 0364
f: +91 (0)33 2281 1639
Associazione Italiana Endometriosi Onlus (AIE) is the first mutual self-help, non profit organisation and only organisation founded by women with endometriosis for women with endometriosis in Italy.
The AIE Onlus provides support and in collaboration with our panel of medical advisors, accurate, current, and independent information about endometriosis for girls and women with endometriosis and others interested in this disease.
Founded in Milan in 1999 by three women with endometriosis the AIE was born out of the founders' desire to provide “tools” to other women in order that they need not experience what they themselves had had to face. Over the last three years the AIE has successfully helped thousands of women
The AIE's activities include (all activities are organised and run by volunteers):
- Network of support groups;
- Range of publications distributed to women, physicians and the general community;
- Attendance at scientific congresses, seminars and other events to raise awareness and present
“the patients point of view.”;
- Quarterly newsletter;
- Medical consultation service;
- Collaboration with national endometriosis specialists;
- Telephone support network;
- Web-site that hosts our highly popular Forum in Italian;
- Regular nationwide meetings with participation of endometriosis specialists open to women and the community to promote better understanding of endometriosis.
Associazione Italiana Endometriosi Onlus
Casella Postale 114
I-20014 Nerviano (MI)
t/f: +39 0331 589800
The Japan Endometriosis Association
(JEMA), which is independent from government and any medical institutions, was established in 1994, and is organised /operated by women with endometriosis. The number of members reached 1,800 in August, 2002. JEMA is a non-profit organisation (NPO) for women with endometriosis that have continued to make efforts to find out the fact, and clarify and resolve the problem that we have faced in Japan. We have continuously provided the useful and beneficial information on endometriosis for most of the women with endometriosis, who could not know the disease and the medical circumstances exactly. Because it is very difficult to reach the actual information and exact knowledge that should be primarily given by medical care providers. We also notified the facts, the actual condition and the disease itself to the family of the women with endometriosis, medical institutions and pharmaceuticals, and the general public, in order to
obtain the recognition of "endometriosis" as it is.
de Endometriosis Capitulo Mexicano, A.C.
Endometriose Stichting was founded in October 2002 as a non-profit registered charity organisation. It is the only self-help organisation for women with endometriosis in Dutch-speaking countries such as the Netherlands and the Flemish part of Belgium. Our work is also directed to induce or take part in research on endometriosis.
We have our own advisory board with physicians with special interest in endometriosis.
2000 VC Haarlem
t: +31 72 581 5320 Monday between 19.00 and 22.00 and Wednesday between 9.00 and 12.00
f: +31 72 581 5207
The New Zealand Endometriosis Foundation Incorporated
(NZEF) is a non-profit, registered Charitable Trust. The Foundation's aims are to provide education, information and support. It organises an internationally acclaimed Menstrual Health and Endometriosis Education programme in schools, publishes quarterly newsletters, convenes meetings and seminars to promote better understanding of endometriosis among sufferers, health professionals and the wider community; promotes research and encourages a nationwide personal network for girls and women sufferers and their families. The NZEF membership subscription is $NZ27.50 per annum. Our contact details are:
New Zealand Endometriosis Foundation Inc.
PO Box 1673
t: +64 (0)3 379 7959
f: +64 (0)3 379 7969
Support Line: 0800 733277 (New Zealand callers only)
Postboks 4391 Lura
Association (Singapore) EASe is a self-help group. We help women and girls with endo learn how to help themselves and take control of their health.
Ordinary membership (S$10) is open to women and girls who have or have had endometriosis.
Associate membership (S$20/S$10 students) or Corporate membership (S$60) is open to individuals and institutions with an interest in endometriosis.
Endometriosis Association (Singapore)
c/o Mount Alvernia Hospital
820 Thomson Road
t: +65 63476640 (office hours only )
f: +65 62505138
The Endometriosis Society of South Africa is a not-for-profit organisation established to educate patients, families, allied health care professionals, and the general public concerning the nature and management of endometriosis as a treatable medical disease. We wish to foster self-help for sufferers and families, and counteract the lack of information and misinformation regarding the disease, by working towards improving access to appropriate medical care. We offer:
- Free telephonic help and advise
- One on one appointments for patients to discuss their concerns and clarify their understanding of treatment options.
- A talk held for patients at the rooms of GPs and gyneacologists on "Understanding Endometriosis".
- Brochures on endometriosis
- Educational talks to Clinics/Hospitals or any interested parties.
Endometriosis Society of South Africa
7 Crescent Drive
t: +27 (0)11 646 0449
Asociacion de Endometriosis Española
(AEE) was founded in 2002. The main goal of the AEE is to help and support all Spanish women with endometriosis by providing them with high quality information for a better understanding of this frequent illness. In the AEE magazines, our suscribers
(patients, relatives, friends and doctors) will find what is known about endometriosis, recent research done around the world and any news about the illness as well as a list of gynaecologists specialised on this illness on our country. Another top priority task of the AEE is to create support groups throughout all the Spanish territory. The AEE also offers to all women, relatives and friends interested to know more about endometriosis, willing to help and support others or that need to find support, the opportunity to get together on our web forum!
Asociacion Endometriosis España
Calle Mayor, 29
E - 17455 Caldes de Malavella
S-167 14 Bromma
EndoLiv was founded in 2002. Membership is open for women suffering from
endometrioses and for supporting members. Our first priority is managing Svenska Endolistan,
a Swedish mailing list for women suffering from
endometriosis. The list has been running since 1998 and have more than 250 members. We also manage a website, publish a newsletter for members, and
arrange member activities.
S-133 34 Saltsjöbaden
The National Endometriosis Society provides a friendly voice, offering hope, advice and support for women with endometriosis. We are working hard to increase awareness and understanding of endometriosis so that diagnosis and treatment is more effective. This way we will be able to support thousands more women.
Our work covers the
- A helpline that is available 365 days a year
- Support Groups around the country
- A range of publications and fact sheets
- Self management courses
- Volunteer training courses
- Funding research into the causes of endometriosis
- Campaigning for increased awareness and best practice
from health professionals
National Endometriosis Society
50 Westminster Palace Gardens
London SW1P 1RL
t:+44 (0)20 7222 2781
Freephone Helpline: 0808 808 2227
Endometriosis SHE Trust
works towards a future position where women’s lives
and relationships are no longer adversely affected by endometriosis.
It provides impartial
support, information and education to all who have an interest in, or are
affected by endometriosis.
The SHE Trust publishes over 50 information leaflets,
produces three “Key” Newsletters each year and holds regular “workshops”
throughout the UK. Training
facilities are being developed for practitioners working with endometriosis in
the medical, complementary and nutritional fields.
A long-term study of the health of women with
endometriosis is being conducted, with an additional aim to study the health of
post-menopausal women who have had endometriosis.
The SHE Trust
14 Moorland Way
t/f: 0870 7743665 / 4
Endometriosis Association is a non-profit
self-help organisation dedicated to helping those affected by endo, educating
about the disease, and promoting endo research. It funds research through the
Endometriosis Association Research Program at Vanderbilt University School of
Medicine, and an Open Research Fund, which sponsors independent researchers
throughout the world. Contact the
Association about current deadlines for applications.
The Association was started in
1980 and now have groups and members in 66 countries. It has written two books, with a third in the pipeline for 2003, and has
brochures available in 28 languages.
Members receive many benefits. Join us! Together, we make a
The Endometriosis Association
8585 N. 75th Place
Milwaukee, WI 53223
t: +1 414 355 2200
f: +1 414 355 6065
Endometriosis Research Center was founded by
Executive Director Michelle Marvel in 1997.
The ERC provides extensive educational materials, videos, and newsletters
on every aspect of endometriosis to physicians, patients and all those
interested in the disease; works with legislators to facilitate research
funding; assists with clinical trials, developmental studies and data
collection; lobbies the NIH and similar foundations in support of grants; and so
The ERC is also implementing their latest program for
professionals only, EndoMED™. In addition, the organisation hosts a vast
support network, currently with over 40 in-person active support groups around
the world and the Internet's largest electronic support group.
There is never a cost to participate in or benefit from the ERC's
Are you interested in being a support group leader? The ERC has information for you - download the information kit
PDF format (172kb)
Endometriosis Screening &
Education Kit developed in collaboration with The United States Department
of Health & Human Services Office on Women's Health.
Download the information kit in PDF format (379kb) Includes information such
Endometriosis Self-Test: Do You
Have Endometriosis? Only Surgery can Diagnose the Disease, but this Test can
Help You & Your Doctor
Endometriosis: Answers to
Frequently Asked Questions: Your Guide to Understanding the Enigmatic
Endometriosis Pain Journal:
Monitor & Communicate Symptoms to Your Healthcare Provider
Where to Get Help: About Our Education, Awareness, Support & Research
Endometriosis Research Center
630 Ibis Drive
Delray Beach, FL 33444
t: +1 561 274 7442
f: +1 561 274 9117
Endometriosis Research Center
630 Ibis Drive
Delray Beach, FL 33444
t: +1 561 274 7442
f: +1 561 274 9117
Greaterboston_endo · MA support group for Endometriosis Assn
This is a non profit support group organized by myself, Jennifer Sullivan,
with the help of the Endometriosis Association, for women or anyone who is
affected by a chronic and painful medical condition, endometriosis. I am
implementing new changes in 2009 for this group, which will hopefully reach more
women. I am beginning weekly "online support group meetings", in addition to
either monthly or every other month meetings, with special topics and key note
speakers, including a top endometriosis doctor from one of the country's best