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XX Gonadal Dysgenesis

What is XX Gonadal Dysgenesis?

XX Gonadal Dysgenesis is a disorder of the female reproductive system in which functional ovaries are not present to induce puberty.

 

XX Gonadal Dysgenesis is a disorder of the female reproductive system in which functional ovaries are not present to induce puberty.
Acknowledgement of XX Gonadal Dysgenesis has not been added yet.
12.0http://www.orpha.net
Synonyms for XX Gonadal Dysgenesis has not been added yet.
Cause of XX Gonadal Dysgenesis has not been added yet.
Symptoms for XX Gonadal Dysgenesis has not been added yet.
Diagnosis of XX Gonadal Dysgenesis has not been added yet.
Diagnostic tests of XX Gonadal Dysgenesis has not been added yet
Treatments of XX Gonadal Dysgenesis has not been added yet.
Prognosis of XX Gonadal Dysgenesis has not been added yet.
Tips or Suggestions of XX Gonadal Dysgenesis has not been added yet.
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Let's start something... Created by karafay13
Last updated 19 Jun 2015, 09:07 PM

Posted by Dysgenesis24
19 Jun 2015, 09:07 PM

Have they run all the tests on you?? Did they start you on estrogen and progesterone?

Posted by TMZiegler
18 Jun 2015, 05:49 AM

My daughter was just diagnosed. While I have found many sites about it, I have not found any other support groups.

Posted by karafay13
2 Dec 2009, 03:20 AM

Well I know I'm not the only one in the world affected by this condition and I joined this site to hopefully reach others who are on the same boat. Any comments?? When did you or someone you know receive the news about their condition and how long have you known? Have you come across other health issues regarding this?? I am 22 years old and have just pretty recently been diagnosed with this so it's very new to me. Any feedback is much appreciated, thanks! :)

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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.

  1. Complete the screening form.
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  3. 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.

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Created by karafay13 | Last updated 19 Jun 2015, 09:07 PM


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