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.
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How is fibrosing mediastinitis treated? How can I learn more about research? See answer
Unknowingly I contracted histoplasmosis related fibrosing mediastinitis in my youth. The calcium scarring has asymptomatically over-grown my superior vena cava completely occluding it. Can I become re-infected by another encounter with H. capsulatum fungus? Are my prodigy at higher risk of contracting fibrosing mediastinitis? Is there a genetic component? See answer