The Trisomy Medical List is an e-mail based support group that was formed by a group of families in 1997 for families, friends and health professionals who share a common medical, academic and emotional interest in the rarer trisomy conditions.
Because of the relative rarity of these conditions, families and friends are often separated by large distances and so often feel very isolated. 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. By using email we are given freedom, privacy and security to discuss subjects openly - all in the comfort of our own homes.
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.
Trisomy Medical aims to support families after the diagnosis, during the pregnancy and whilst decisions and choices are being made. We also support families after the decision making process, during their child's life and after the child's death.
This is done by sharing our love, knowledge and experiences. By sharing information with others we often learn a great deal from the questions and experiences of others. Things which we may be afraid to ask or not have even thought of at this particular time in our lives.
List members represent many different trisomy conditions (including full, partial, mosaic, 18, 14, 13, 8, 6, 4 etc.) and live in many different countries. For although the number of the chromosome may be different, many of our emotions, questions and concerns are similar.
Subscription to the listserv is completely free and voluntary. People may join or leave the list at will.
No e-mail address will ever be sold for profit or used in any way except in relation to the list.
We have taken every precaution to protect list members from spam and there are no advertisements in the emails. For more information about the list structure and options please visit our Frequently Asked Questions section.
If you have any other questions, concerns please email Karen the list owner
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,
or family, 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.