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We are not doctors. This is not medical advice. You need to verify all information provided with your doctors. The information on this site was provided by medical professionals. If your doctors need to verify any of the information on this site please contact us or have your doctors contact us so we my connect them or you with the doctors themselves.

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All donations are tax deductible. Click here to see our 501C3 registration information.

100% of donations are used for research purposes. This means we do not take a salary nor do we use any of the donated money for maintenance of the website or other information dissemination purposes.

Our primary focus through 2015 will a series of genetic tests that we will be assisting several researchers in conducting. There is a cost associated in providing testing materials to patients outside of the US and anyone inside of the US that qualifies. Usually qualification depends on the health insurance status of the patient. If they cannot afford to obtain the testing required for the study we will provide the means to do so through the donations we receive.  

We will also be accepting medical equipment which can be donated to our community base as needed. Requests for medical equipment can be submitted to the foundation here and we will do our best to locate what you need. Donations can also be used for this purpose for those that cannot afford to obtain this equipment on their own.

You may donate using the links below or mail checks or money orders to the address below. Please do not mail cash for your own protection.

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Mail Donations to:

The International Foundation for

Emery-Dreifuss Muscular Dystrophy

PO Box

Kings Park, NY 11754

We are now incorporated as a non-profit organization waiting on 501c3 status from the IRS. Once approved we will begin accepting donations. Please check back for updates. You can follow us on Facebook to see when we start accepting donations.