Rareshare

I am an older woman and may have Triple X syndrome. There is only one post on this forum but I would like to compare experiences and problems. From what I have read women with Triple X, unless they have a supportive family, can have various problems. Even with loving support Triple X women can have significant health problems and social problems. Not much research about TripleX and most of the studies were limited, done years in the past and done by men. Hope to hear from you.

View Full Thread

xxx syndrome Created by granny
Last updated 31 May 2009, 07:28 PM

Posted by doolelaine
31 May 2009, 07:28 PM

My daughter is 8 years old & we just found out she has triple X. Have not had the follow up appointment yet with the geneticist doctor for explanation. Have received some information about it from the genetic counselor that called us & told us. I've done some looking on internet and have found some info. Where is the best place with true, accurate, info on this? How well known is this? Are there any studies? Thanks for any info.

Posted by granny
2 Jan 2009, 01:58 AM

My daughter is 21 yrs old with triple x,I have questions and answers for any one who would like to talk.

View Full Thread

Community Resources

Title	Description	Date	Link
Triplo-X Syndrome	An online resource for people affected by Triplo-X Syndrome.	03/20/2017

Clinical Trials

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

Complete the screening form.
Review the informed consent.
Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.