Rare Disease Alerts

Plain-language alerts when something public happens for a rare condition you follow.

Rare Disease Alerts is an iPhone app. Follow a condition by name, by a medicine you take, or by body system or gene, and the app tells you when there is a new FDA approval, a change to a medicine's prescribing information, a recall, an orphan designation, or a clinical trial that starts recruiting or posts results. Each item is a short summary of a public record, with a link to the source.

This is a summary of public records. It is not medical advice. Talk with your care team about what it means for you.

Sources

FDA Drugs@FDA, FDA drug labels (DailyMed), FDA orphan designations, openFDA enforcement reports, and ClinicalTrials.gov through the AACT database. Conditions come from Orphanet and MONDO.

About the developer

Rare Disease Alerts is made by Discus Ventures, a small company that builds tools around public drug and trial data. The app is a publication layer over that work: a nightly job reads the public records, writes short summaries, and the app shows them for the conditions you chose.

What the app does not do

It never tells you what to do about your care. It has no information about insurance or cost. It does not track symptoms, doses, or anything about you. Your follows stay on your phone; see the privacy notice.