Unhiding the Bigger Picture of Ehlers-Danlos Syndrome

We currently have 253 participants reporting an Ehlers-Danlos syndrome (EDS) diagnosis on our digital health and research platform, unhide®.

Here is some of our interesting preliminary data...

Below is a graph that quantifies the diagnostic overlap between EDS and other self-reported conditions in our EDS cohort (blue bars, participant # in parentheses).

This patient-powered digital platform provides a scalable research framework. The more participants we have, the more robust the data and the more the overlap becomes 'unhidden'.

Additional preliminary data assessed quality of life among participants diagnosed with EDS (using the validated SF-36 survey; green and blue bars).

The unhide® platform helps us study more than EDS.

We currently have >4,000 adult and >100 pediatric participants who have been diagnosed with, or are suspected of having:
- EDS
- POTS
- PANS
- MCAS
- ME/CFS
- Long COVID
- and many more

The platform is also home to many validated instruments such as:
- SF-36 (Quality of Life)
- FSS (Fatigue Severity Score)
- GAD-7 (Generalized Anxiety)
- FUNCAP-27 (Post-Exertional Malaise)
- Beighton (Hypermobility Assessment)
- DSQ-SF (ME/CSF and LC Symptom Score)
- COMPASS-31 (Autonomic Symptom Score)
- Karnofsky (Measures Ability to Perform Daily Activities)

unhide® can also integrate with most wearable devices to help capture longitudinal symptom and treatment tracking.

We thank the 4,000+ participants using unhide®! Also, a huge thank you to our donors.

To learn more about unhide®, visit