Two head shots. One is John Ferman, a man with short brown hair wearing a suit. He is smiling. The other one is Karina, a woman with shaved hair, wearing a black hat and huge silver hoops

In collaboration with John Ferman, CEO of the non-profit organization EDS Awareness, I am curating a new EDS newsletter called Chronic Pain Partners Post. We plan for this newsletter to be a place for everyone to share their work on EDS. It’s a community project with useful resources, science updates, events, content from advocates all across the globe and more. 

Each newsletter has the following sections: 

  • Stronger together: A short text written by an EDS advocate; each month, a different advocate introduces the newsletter
  • EDS in the media: Recent articles and blogposts on EDS
  • EDS advocates: Podcasts, Social Media, YouTube channels of fellow EDS advocates
  • Advocates like us: Other interesting channels by advocates with similar conditions
  • Spotlight: Chronic Illness & Disability: Other interesting projects around disability and chronic illness overall
  • Research & Resources: Latest research on a specific topic
  • Connect & Events: Platforms to connect with other chronically ill people and recent events to join
  • Our own content: Our media team works hard to provide interviews, reviews, articles on all things EDS

If you would like to write some words for one of the monthly newsletter intros or if you have any link you want to share, please let me know! I am here to share your work and to connect us all. 

All recent newsletters:

May 2021:

June 2021:

July 2021:

August 2021:

September 2021:

October 2021:

November 2021:

December 2021:

February 2022:

March 2022:

April 2022:

May 2022:

June 2022:

You can sign up for the newsletter here: