If you/your family member has/have a confirmed diagnosis of a genetic metabolic disorder and want to participate in the National Patient-Teacher Registry, please click here to submit your info online (non-secure) or you may download the forms to the right, fill out, and fax into 866-744-5665 (secure).
Following are typical questions that may arise:
We want to educate the medical and greater health community about metabolic diseases so more health professionals can play a role in the diagnosis and management of these disorders. We believe that education has a significant part to play in addressing the workforce shortage in Genetics.
We at VMP Genetics are committed to education in many forms, and we recognize the incredible power of patient storytelling as a compelling way of informing clinicians and students. The impact of the patient experience is more personal and penetrating than anything a lecturer can deliver, which creates long-lasting impressions about rare diseases.
We are planning to facilitate teaching opportunities in which patients and family members participate in live, in-person presentations at medical schools and hospitals, or through pre-recorded videos downloaded into a lecture hall or auditorium.
VMP Genetics will establish an online registry, listing only the diagnosis and information about the geographical location (city/town/state/province) of all patient-teachers. No personal information about the speakers will be visible to the public on the registry website.
A doctor or educator who wishes to have a patient-teacher come to her/his classroom will be able to access the registry and find out for which diagnoses speakers are available in that locality.
A physician or educator will select a diagnosis in his/her location from the registry, and submit a speaker request form to VMP Genetics. VMP Genetics will confirm the identity and credibility of the request and educator (e.g., status as a faculty member at a medical school).
After confirmation, VMP Genetics will notify the patient-teacher about the details of the request, and provide the educator’s contact information to the speaker. Patient-teachers then have the option of either accepting the request and reaching out to the educator, or letting VMP Genetics know they are unavailable (VMP Genetics will then notify the requesting educator).
If a problem arises after a presentation is booked, and the speaker cannot attend the session, the speaker should notify the educator ASAP that s/he cannot attend.
Each patient-teacher and educator collaboration will have flexibility as to what they’d like to include in their presentation. Typically, the class will have been educated about the disease beforehand, and the patient-teacher then presents her/his story present afterwards. There may also be a brief personal introduction.
The patient presentations usually run between 20 and 40 minutes, and the format of the presentation itself (e.g., informal and off-the-cuff, a slide presentation, etc) is usually left up to the speaker. The session often ends with a question-and-answer period and closing remarks.
There may be a request to film the presentation for the benefit of others who cannot attend the live session. You can decide whether or not you and comfortable with this plan; it is not a requirement.
There is usually no payment involved with volunteering as a patient-teacher for a medical school or a medical center. If an honorarium is provided, it is offered by the school or center directly to the speaker. VMP Genetics is not involved in these arrangements and does not offer payment.
Speakers should ask the educator about reimbursement for travel expenses such as gas, parking, or other costs associated with getting to the location, if appropriate.
The privacy of the patient-teachers is maintained in several ways:
A consent form ensures that patient-teachers and VMP Genetics are both clear about the operations of the program, what is expected of each party, and how privacy is maintained in the project.
Not at all! For many, this might be the first opportunity to teach a medical audience! VMP Genetics will be able to provide some guidance about how to prepare such a presentation, what topics might be of interest to the audience, and how to deliver the information effectively, so the experience can be a successful and rewarding one.
Please feel free to reach out and ask questions and give comments! And let us know how your teaching experience went! Do to our Contact page to send us a message.