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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My disease seems to be progressing slowly. But, I am curious to how many years will it take until I am no long able to get around with just my cane? Apparently, I have had this 15-20 years and do use a cane when I leave my house (for balance), but do not use it at home. Also, since I cannot find much at all to read about what I have, how can I find out more, or new discoveries about it? See answer
I have been diagnosed with trabecular fiber myopathy and can find nothing about it. I would like any information you can give me. See answer