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.
Rare Tumors Initiative Symposium Strategies to Develop Therapies for Rare Tumors: Small Numbers, but Big Opportunities
Wednesday, June 17, 2015
Location: NIH Natcher Conference Center, Bethesda, MD
Description: The goals of this symposium are to increase communication and build networks between researchers working in rare tumors across NIH, and to get input from patient groups, industry, and the FDA on how to overcome the biggest hurdles in the development of therapies for rare tumors. The Rare Tumors Initiative at NCI, CCR will use this information to prioritize goals for the future and will prepare a white paper summary to help guide researchers worldwide.
Contact: Dr. Karlyne Reilly,(301) 846-7518, firstname.lastname@example.org
Co-funding Institute(s): National Cancer Institute, Office of Rare Diseases Research
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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