Q86 · Healthcare · United States
Patient organizations focused on rare diseases
United States: 593 in as of 5 Oct 2023.
- 593 Latest · United States · as of 5 Oct 2023
- Irregular Release cadence
- 1 Record · 1 region · 2023
Verified 28 Sep 2026 · 1 publisher
The figure
One published observation so far. A chart follows as soon as a second period is published.
Patient organizations focused on rare diseases
United States, as of 5 Oct 2023
Every record
1 record · 1 region · 2023. Each period links to its record: the value, its source evidence and original document.
| Period | Value | Source | Type |
|---|---|---|---|
| United States 1 record | |||
| as of 5 Oct 2023 | 593 | IQVIA · 5 Oct 2023 | estimate |
Download this data
Every file carries its provenance: the CSV has a source column per row, and the chart images print the publisher, the licence and this page's address under the drawing. Source: IQVIA. Licence: CC BY 4.0.
Use and publication rights
- View, cite and link: free
Quote any number, cite this page or a single record, and link to it anywhere.
- Copy, chart and republish: free with attribution
The data is published under CC BY 4.0, commercial use included. Credit StatOrigin and the original publisher (IQVIA); the chart files already carry that line.
- The source documents: the publisher's terms
Figures are facts read from the publishers' own documents. The documents themselves, their text and design, stay under each publisher's terms; follow the source links for those.
How this measure is built
- Definition
- Number of patient organizations whose focus is rare diseases.
- Measure
- One slice of Patient organizations ( form: count, segment: rare diseases ) . Total count of active patient advocacy and support organizations. Region and period are columns on every record, not slices.
- Limitations
- Values are shown as published; StatOrigin does not revise, fill gaps or convert currencies.
- Verification
- Each value, unit, period and place was checked against its source evidence before publication. See the methodology and the corrections process.
Sources · 1 document
| Document | Publisher | Published | Data points |
|---|---|---|---|
| Supporting patients through research collaboration | IQVIA | — | 1 |
Other slices of patient organizations
Frequently asked questions
What is the latest patient organizations focused on rare diseases?
United States: 593 in as of 5 Oct 2023.
Where does this data come from?
From 1 document published by IQVIA. Every figure on this page links to its record, which preserves the original source evidence.
How often is it updated?
Irregularly: the publishers behind this measure do not release it on a fixed schedule. A new figure appears here once it is published and verified.
Can I use this data?
Yes. StatOrigin publishes it under CC BY 4.0: you may copy, chart and republish it, including commercially, with attribution to StatOrigin and to the original publisher.
Cite this page
Cite the page as a data set, or open any record to cite one figure: each record carries APA, MLA, Chicago and BibTeX forms that credit the original publisher.
StatOrigin. (2026). Patient organizations focused on rare diseases [Data set]. Retrieved October 22, 2026, from https://statorigin.org/indicators/patient-organizations-focused-on-rare-diseases
"Patient organizations focused on rare diseases." StatOrigin, 2026, https://statorigin.org/indicators/patient-organizations-focused-on-rare-diseases. Accessed 22 Oct. 2026.
StatOrigin. "Patient organizations focused on rare diseases." Data set, 2026. Accessed October 22, 2026. https://statorigin.org/indicators/patient-organizations-focused-on-rare-diseases.
@misc{statorigin_patient_organizations_focused_on_rare_diseases_2026, title = {Patient organizations focused on rare diseases}, author = {{StatOrigin}}, year = {2026}, url = {https://statorigin.org/indicators/patient-organizations-focused-on-rare-diseases}, note = {Data set. Accessed 2026-10-22} }