Resources
Members of the OPMD Community and muscular dystrophy nonprofits have shared resources that we hope are helpful. Resources include muscular dystrophy care centers, OPMD clinicians, national OPMD registry, medical equipment options, helpful tips and links.
Care Centers and Clinicians
OPMD Clinician List
The OPMD Association continues to update the list of clinicians who work with or who have worked with OPMD patients. If you don’t see your doctor on this list, you can help other OPMD Community members by sharing your caregiver’s contact information, Contact Us.
The information provided by the OPMD Association on this website is not a recommendation. Please see the full Clinical Disclaimer.
Muscular Dystrophy Association (MDA), Care Center List
This care center list is provided by the Muscular Dystrophy Association, mda.org/care/care-center-list. If you have questions about any of these care centers, please contact the MDA resource center, 833-275-6321.
Muscular Dystrophy Association (MDA), Access Workshop
Access to medical care is available on-demand. Learn how to navigate the healthcare system and to educate providers and caregivers about neuromuscular disease. mda.org/care/access-workshop/2023/access-to-medical-care
The information provided by the OPMD Association on this website is not a recommendation. Please see the full Clinical Disclaimer.
Grants
Nonprofits, companies and community organizations provide grants that support OPMD patients and their families.
Registries
OPMD Community Registry
Join the OPMD Association Community Registry. Click on the link, Community Registry, and fill out the form. Registrants will receive information about how to directly contact the research organization.
Testing
Lantern Project: Free OPMD testing is now provided by revvity through their Lantern Project. The OPMD test is included in the Focused Neuromuscular Disease Panel. All pages of the Lantern Project Requisition Form must be filled out and faxed to 470-201-1321. If you need more information, call 866-354-2910.
https://www.revvity.com/category/focused-neuromuscular-disease-panel
Athena Diagnostics: This company tests for OPMD, Test code 300. Your insurance may cover the testing fee.
athenadiagnostics.com
athenadiagnostics.com/view-full-catalog/o/opmd-dna-test
The information provided by the OPMD Association on this website is not a recommendation. Please see the full Clinical Disclaimer.
OPMD Community Resource List
The equipment list, tips and links are gathered from the OPMD Community. Do you have an incredible doctor OR really love a mobility product OR have a great suggestion for your OPMD friends? Contribute to the website resources page. Contact Us to contribute.
Equipment List
Helpful Links
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OPMD Association Facebook page link, OPMD Association Non-Profit for Oculopharyngeal Muscular Dystrophy | Facebook
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OPMD Facebook Group, to join OPMD Oculopharyngeal Muscular Dystrophy | Groups | Facebook
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MDA link, Muscular Dystrophy Association (mda.org)
The information provided by the OPMD Association on this website is not a recommendation. Please see the full Clinical Disclaimer.
Clinical Disclaimer
The information provided by the OPMD Association on this website is not a recommendation of any particular physician, care center or therapy. Always seek professional medical advice from a physician or clinician. Information on this website is not intended to replace the services of a trained physician or health care professional. It is not a substitute for professional medical advice, diagnosis, or treatment. You should not make any medical or health-related decisions based in whole, or in part, on any information found on this website. Consult a licensed physician or appropriately-credentialed health care professional regarding all matters relating to your health.
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