LARA BLOOM

President & CEO:

The Ehlers-Danlos Society

Patient Engagement & Advocacy Expert

for Rare, Chronic & Invisible Conditions

Public Speaker & Campaigner

  • Facebook
  • Twitter
  • YouTube
  • Instagram
Subscribe to Vlog

Subscribe to my YouTube Channel for monthly Vlog updates.

 

Follow my journey advocating and representing the patient voice in rare and invisible diseases worldwide, as well as gaining an insight into my personal experience as a patient.

© 2019 Lara Bloom

Assessment of the Information Sources and Interest in Research Collaboration Among Individuals with

Presented at the Pacific Northwest Vascular Society Annual Meeting, Seattle, WA, on October 11, 2018 and in part at the fifth GenTAC Thoracic Aortic Disease Summit, Portland, OR, on October 7, 2018.


Patient-centered research requires active engagement of patients. The vascular Ehlers-Danlos Syndrome (vEDS) research collaborative was established to ascertain patient-centered vEDS research priorities and to engage affected individuals as research partners. Evaluation of access to information and interest in research among individuals with vEDS was the first step undertaken as part of this work.


Go to article