Ways to Get Involved

Submitting Medical Records

One of the easiest ways you can help is by submitting yours or your family member’s medical record who is affected by a rare or neglected disease. You submission will be added to our current repository and will help build up our data library to be used in the future to aid in rare and neglected disease research. If you would like to donate your medical record to us, please contact Marisa Truong (mtruong@nd.edu) for more information about the submission process.

Student-Patient Collaboration Program

We welcome you to participate in collaborating with our students. It will not only give you an additional avenue to increase awareness about your particular disease, but also open up an opportunity for our students to develop personal relationships with patient families. We hope that these personal collaborations will help foster more interest among students going into the health care field and increase awareness for rare and neglected diseases.

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