Your input is needed for this very important EDS survey:

My name is Linda Tao and I am currently studying at Harvard Business School (HBS).  I am conducting a research project on a "Multi-disciplinary approach to EDS," a topic that I am incredibly passionate about because I am an EDS patient and I believe that early diagnosis and correct methodology can significantly improve our quality of life. 

Many EDS patients go undiagnosed for multiple years or receive the wrong diagnosis.  That is only the start of a journey involving multiple disciplines of medicine as new symptoms and associated diseases/conditions arise.  The patient experience is challenging, and the patient is often left to navigate the system on his or her own.  

The reason I am reaching out to you is because I am hoping you could provide me with input for the key area of my research: Understanding the patient path to diagnosis and treatment/management (from the patient's perspective). 

You could help in two ways:

1.   Please complete this survey by Friday, October 31st

2.   Please post the survey link on your local support group websites, Facebook, etc.  Also email it to other EDS patients within your network.

Research goal: A roadmap for EDS patient diagnosis and care

Survey Details:

·      Minimal typing - The survey consists of 30 to 38 questions (depending on your unique patient experience)  The majority are "check-the-box" answers.

·      You may take breaks -  At any point in time before completing the survey, you can exit by closing the window.  Your incomplete results will be saved automatically and you can re-open your survey through the link.

Sincerely,

Linda Tao