The trisomy listserv is an e-mail based support group for families, friends and health professionals who share a common interest in the rarer trisomy conditions.

Because of the relative rarity of these conditions, families are often separated by large distances. The technology of the internet offers us the unique opportunity to share our joys and sorrows, offer support and comfort to each other regardless of where we are geographically. List members represent many different trisomy conditions (including full, partial, mosaic, 18, 14, 13, 8, 6, 4 etc.) and live in many different countries.

Subscription to the listserv is completely voluntary, people may join or leave the list at will. No e-mail address will be sold for profit. Membership is open to all who have an interest in Trisomy conditions and related disorders, and who are willing to abide by the list rules. We aim to support families after diagnosis, during the pregnancy, the child's life and after the child's death, to share our love, knowledge and experiences.

It is important to realise that the list does not replace the individual medical care that, each child receives from their own doctor. So although medical information and experiences are freely shared on the list, this information should be discussed with your own child's physician before any treatments or changes in treatment are made.

The reality is that no-one has any magical answers, there are no experts in the field of Trisomy and what works for one child may not apply to another. Few doctors will possibly see and treat more than one child with a rare Trisomy in a lifetime therefore specific knowledge is limited. But by sharing information, and caring for each other, we are in a better position to make informed choices and hopefully better able to help our children and ourselves.

 

The trisomy listserv can be heavy in mail volume as it does not operate along strict on-topic post guidelines. The reason for this is that the list members often live with a great deal of stress. The occasional off topic post, in good taste, can add a smile and rainbow to everyone's day. It helps to make us family, and as in any family life is not always business. This can make the list seem overwhelming at first, however most people find that very quickly they learn to follow threads.

For this reason we have divided the list into two. There is Tri-Med and Tri-Family. The Tri-Med list is intended purely for issues related directly to the health and welfare of Trisomy. Tri-Family on the other hand is intended for those posts of a more general nature relating to the stresses of living with a trisomy diagnosis.

Below you will find links for subscribing and unsubscribing to the listserv as well as list guidelines and other valuable information. If you encounter any problems please do not hesitate to mail Karen, as the list "mum".

How to Subscribe

How to Unsubscribe

List Do's and Don'ts

Frequently Asked Questions (about the list)

List Archives

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This page was last updated on 12th February 2000