top of page

The New Disability Publication on Connective Tissue Disorders

Updated: Aug 2, 2022

Here is our first Hypermobility Hack:

Stay informed!

In our premier episode of the Hacking Hypermobility Podcast, we discussed the preliminary

report published by the U.S. government with experts on connective tissue disorders such as the Ehlers-Danlos Syndromes (EDS) and the Hypermobility Spectrum Disorders (HSD).

To help our listeners we’re making the report available for download right here on our website. Attached is both the full book and the two smaller accompanying summary reports.

Heritable CTD Book
Download PDF • 10.19MB

HCTD Report Highlights
Download PDF • 291KB

HCTD Report Conclusions
Download PDF • 77KB

The extensive report titled “PREPUBLICATION Selected Heritable Disorders of Connective Tissue and Disability” was published in June 2022. The link above will take you to the government website with options to read online, download via their portal, and report information.

The report was a joint effort from two federal government bodies, one that oversees supplemental disability coverage and the collective of national science academies.

The U.S. Social Security Administration's (SSA) asked the National Academies of Sciences, Engineering, and Medicine to convene an expert committee that would provide current information regarding the diagnosis, treatment, and prognosis of selected Heritable Disorders of Connective Tissue (HDCT) including the effect of the disorders and their treatment on functioning.

The HDCTs studied by the committee include Marfan syndrome and the Ehlers-Danlos syndromes.

The full report is nearly 400 pages. If that length is overwhelming to you, we suggest starting with the two smaller reports:

  1. Report Highlights

  2. Report Conclusions

If you haven't had a chance to listen to our first episode yet, we discussed our opinions on the report. Check out The Hacking Hypermobility Podcast to hear what we had to say:

Thank you listeners!

Thank you so much for listening to our first Podcast! Would you take a moment to follow and rate The Hacking Hypermobility Podcast wherever you listen?

Your feedback will help grow Zebra visibility.

And if you want to stay touch, follow us on social media!


National Academies of Sciences, Engineering, and Medicine. 2022. Selected Heritable Disorders of Connective Tissue and Disability. Washington, DC: The National Academies Press.

92 views0 comments


bottom of page