Twinslist.org Resources

Organizations and Registries for Multiples

Australian Twin Registry

Website: http://www.twins.org.au

Description:

"The ATR is a volunteer register of over 30,000 pairs of Australian twins who are willing to consider participating in approved health, medical and scientific research projects. Core funding is through the federal government National Health and Medical Research Council to help researchers contact twins who might be willing to take part in their projects. All researcher requests to the ATR are carefully reviewed. Approved projects must satisfy ethical guidelines and be of significant value to the area of proposed research. Information concerning ATR members is strictly confidential. We keep in touch with twins via a newsletter, the website, and other activities; we also host research conferences."

The Center for Study of Multiple Birth (CSMB)

Website:  http://www.multiplebirth.com

Description:

"The Center for Study of Multiple Birth is recognized internationally as a unique resource for research and information about the causes, effects and problems of multifetal pregnancy. Peer professionals, multiples and their families, and the print and electronic media look to CSMB as the authoritative source of information in its field."

Combined Organization of Multiple Birth Organizations (COMBO)

Address:

COMBO
c/oJudi Linney
27 Woodham Park Road
Woodham
Weybridge, Surrey
England

Phone: (03) 726-5579

Finnish Twin Cohort Study

Website: http://www.twinstudy.helsinki.fi/

Description:

"This ongoing project began in 1974. The twin panel consists of two nationwide samples of the Finnish twin pairs. The first consists of like-sexed twin pairs born before 1958 and alive in 1975. The other sample of twin pairs born between 1958 and 1986 was compiled in 1987. The aim of the project is to study the environmental and genetic factors in selected common chronic diseases; especially cardiovascular diseases, common malignant tumors, and chronic obstructive lung diseases. Other diseases and risk factors for disease can also be studied."

International Society for Twin Studies

Website:  http://www.ists.qimr.edu.au

Description:

"The International Society for Twin Studies ( ISTS) is an international, nonpolitical, nonprofit, multidisciplinary scientific organization. Its purpose is to further research and public education in all fieldsrelated to twins and twin studies, for the mutual benefit of twins and their families and of scientific research in general. The Society was founded in Rome in 1974."

International Twins Association, Inc. (ITA)

Website: http://www.intltwins.org/

Description:

"The International Twins Association was organized by and for twins in 1934. It is a non-profit, family-oriented organization to promote the spiritual, intellectual, and social welfare of twins and multiples throughout the world."

The Massachusetts Twin Registry

Website: http://www.bu.edu/psych/labs/twin/front.htm

Description:

"The Massachusetts Twin Registry at Boston University is comprised of both fraternal and identical twins who are residents of Massachusetts. Enrollment in the Registry is voluntary. In the future, we will invite members of the Registry to participate in paid behavioral and biomedical research projects. Members are not obligated to participate in any study.."

Multiple Births Foundation

Website: http://www.multiplebirths.org.uk/

Description: "The Multiple Births Foundation is an independent charity based at Queen Charlotte's & Chelsea Hospital in West London. A vital resource to professionals and families alike, it aims to improve the care and support of multiple birth families through the education of all relevant professionals."

Netherlands Twin Register(NTR)

Website: http://www.tweelingenregister.org/index_uk.html

Description: The Netherlands Twin Register (NTR) was founded on February 1st 1987 at the Vrije Universiteit in Amsterdam to conduct scientific research. The study of twins and their family members can provide insights into the way differences between individuals are determined by hereditary and environmental influences. With the continuous help of the registered twins and their families, the NTR examines the influence of genes and environment on the development of the brain, intelligence, problem behaviour in children, health & life styles, anxiety & depression, personality and aging.

Twins, Inc.

Website: http://members.aol.com/twinsinc2/index.html

Description:

Support group for adult twins in New England (Boston) and Midwest (Chicago)

Twins Foundation

Website: http://www.twinsfoundation.com/

Description:

"The Twins Foundation is an international membership organization and primary research information center on twins and other multiples. It serves twins, their families, the media, medical and social scientists and the general public through its publications, its National Twin Registry and its multi-media resource center."

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Information & Support for Twin Related Medical Issues

Australian Twin to Twin Transfusion Syndrome Support Group

Website: http://www.twin-twin.org/

Description:

The Australian TTTS Support Group is an Australian group of parents who have experienced a pregnancy affected by TTTS. Their goals are to provide:

• hope to parents experiencing TTTS
• information about the condition
• information about treatments available within Australia
• support and an opportunity to share stories for those who have had TTTS.

Fetal Treatment Program

Website: http://bms.brown.edu/pedisurg/FetalTreatment.html

Description:

"The Fetal Treatment Program is a collaboration between the Program in Fetal Medicine at Brown Medical School, Hasbro Children's and Rhode Island Hospital in Providence, both part of Lifespan, Women & Infants' Hospital of Rhode Island and the New England Medical Center/Tufts University in Boston.. At each institution, there are a a large number of specialists who are experts in the diagnosis of fetal anomalies and the management of the unborn child. In addition, this collaboration between two centers allows all of us to share our experience and expertise, and to give you even more options for treatment. "This site offers information for (future) parents on a number of fetal conditions, and a detailed description of the fetal surgery options in twin-to-twin transfusion syndrome."

Recommended article regarding laser treatment vs. amnioreduction for TTTS: http://content.nejm.org/cgi/content/abstract/NEJMoa032597

Monoamniotic.Org

Website: http://www.monoamniotic.org/

Description:

"This site has been created and supported entirely by volunteers, parents, and expecting parents that have been diagnosed with a monoamniotic pregnancy.

"We have a great deal to offer in the way of information, experience, and hope to those who have just been diagnosed, to those who have already delivered but looking for others to relate to, and to those who have lost due to this very rare and high-risk type of pregnancy."

TTTS Awareness Webpage

Website: http://ttts.8k.com/main.htm

Description:

This is an information, research and support site for those diagnosed with Twin to Twin Transfusion Syndrome. Although this site is the Australian TTTS Awareness site, you can find resources worldwide, in Australia, South Africa and in the USA. This website includes general information, lists of TTTS treatment centres and parent contacts, message board, parents stories, memorial and survivor pages, links to TTTS yahoo groups and links to other TTTS websites, loss support information and NICU information.

Twin Hope

Website: http://www.twinhope.org

Description:

"TWIN HOPE, INC. is a voluntary private non-profit organization founded in 1994 by Jill MacNiven and is dedicated to the service of families, to the education of the public and professionals, and to broaden the awareness of Twin-to-Twin Transfusion Syndrome (TTTS) and other twin related diseases."

The Twin to Twin Transfusion Syndrome Foundation

Website:  http://www.tttsfoundation.org/

Description:

"The Twin to Twin Transfusion Syndrome Foundation is dedicated to providing educational, emotional and financial support to families and caregivers before, during, and after pregnancies diagnosed with twin to twin transfusion syndrome. Dedicated to saving the babies, improving their future health and care, and keeping families together."

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Festivals & Conventions

Twins Realm

Description: Twins Realm maintains a site that lists twins festivals world wide.

Website: http://www.twinsrealm.com/festival.html#usa_festival

Annual Twins Gathering in Pleucadeuc-Morihan, France

Website: http://a.loyer.chez-alice.fr/

Nebraska Twins Convention

Description:

The Nebraska Twins Convention is held each October.

Website: http://geocities.com/nebraskatwins/

Texas Twin Round-Up

Description:

The Texas Twin Round-Up is an annual event for all multiples from the great state of Texas (nicknamed the Clone Star State for that day only).

Website: http://www.twinstuff.com/roundup

Twins Days Festival Committee

Description:

"Twins Days in Twinsburg, Ohio is the world's largest annual gathering of twins. Every August since 1976, twins, supertwins, and parents of same from around the world descend on this small town just south of Cleveland for a weekend of socializing, celebration and fun."

Website:http://www.twinsdays.org/

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