Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Got a Great Research Idea? ‘All of Us’ Wants to Hear It!
January 18, 2018
New NCATS Rare Diseases Research Video
December 27, 2017
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
Is radiation and/or chemotherapy considered appropriate if uterine adenosarcoma shows signs of spreading to the lymph node? Is ifosfamid an appropriate treatment? Is it available as an oral medication? See answer
What is the difference between uterine adenosarcoma and uterine adenocarcinoma? Or are they the same thing? I'm trying to research this diagnosis and keep seeing these phrases used interchangeably. See answer
Is there a genetic link involved in this disease? I was recently diagnosed with it and wonder if my sister or other female relatives should be tested. Also how can I best keep up with the news? I'm not looking for technical treatises on mice but for practical information such as the effects of diet, exposure to pesticides, etc. See answer