Privacy policy
What this site collects, why, who it goes to, and how to get it removed. Written for clinicians deciding whether to register and for partners assessing whether working with NIRDs creates a data problem.
- Last reviewed
- July 28, 2026
Who is responsible
Novel Insights in Rare Diseases, LLC is the controller of the personal data described here. Questions, corrections and deletion requests go to Nourin Abu at nourin@nirds.org, or +1 (201) 238-5181.
What is collected
Only what a form on this site asks for. There is no tracking pixel, no advertising tag and no third-party analytics script anywhere on this site, so nothing is collected from you passively as you browse.
- Registration: your name, credential type, NPI number where you supply one, primary specialty, email address, telephone number, institution, city and state, the days you plan to attend, and any dietary or accessibility requirements you tell us about.
- Sponsor enquiries: your company, name, job title, email address, telephone number, the tiers you are interested in, an indicative budget range, a timeline, and anything you write in the message field.
- Abstract submissions: the title, all listed authors, the presenting institution, a contact email address, the abstract text, and the conflict of interest disclosure you provide.
NPI verification
If you enter an NPI number during registration, the ten digits are sent to the National Plan and Provider Enumeration System, a public registry operated by the Centers for Medicare and Medicaid Services, to confirm the number belongs to a registered provider.
The request contains the NPI number and nothing else. It does not carry your name, your email address, or anything else you have typed. The registry returns the provider name, credential, primary taxonomy and practice location that CMS already publishes for that number, and those values are used to fill in the registration form.
Verification is optional. If you would rather not use it, or if the registry does not answer, you can complete the form by hand and NIRDs verifies your registration before the meeting instead.
Why it is used
Registration data is used to admit you to the meeting, to plan room sizes and catering, to pass dietary and accessibility requirements to the venue, and to send you the final program and any changes to it.
Sponsor enquiry data is used to send the prospectus and to have the conversation you asked for.
Abstract data is used to review your submission and to schedule accepted posters.
None of it is used for advertising. None of it is sold.
What partners receive
This is the part most worth reading carefully, because it is where a medical education meeting most often gets data handling wrong.
Partners at certain sponsorship tiers may receive a pre-registration attendee list. That list is provided only where state and federal rules permit it, and only for attendees who have opted in. It never includes dietary requirements, accessibility requirements, or anything you wrote in a free-text field.
Attending a session, visiting an exhibit booth or joining an advisory board does not, by itself, hand your details to that company. If a partner scans a badge or collects your details on the exhibit floor, that is a separate exchange between you and them, governed by their own privacy notice, and you can decline it.
Who else handles it
The site is hosted on Vercel, which processes the technical request data any web host receives, such as your IP address and browser type, in order to serve pages and to protect the service from abuse.
The CMS registry receives NPI numbers as described above and is a United States federal government service.
Email is handled by the NIRDs team's own mail provider. No other processor receives personal data from this site.
How long it is kept
Registration records are kept for the meeting and for the period afterwards in which accreditation records must be retained, then deleted.
Sponsor enquiry records are kept for the duration of the commercial conversation and any resulting agreement.
Abstract submissions that are not accepted are deleted after the review cycle closes. Accepted abstracts are retained as part of the meeting record.
Your rights
You can ask for a copy of what NIRDs holds about you, ask for it to be corrected, ask for it to be deleted, or withdraw consent for it to be used, at any time. Write to the address above and NIRDs will respond within thirty days.
Withdrawing consent after you have registered means your place is released. It does not affect anything done before you withdrew.