Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD. Suggest an organization to add.
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