Earlier this year, we announced a major donation from the Daskal Family Foundation, led by Ierachmiel Daskal, MD, to fund the VEDS (Vascular Ehlers-Danlos Syndrome) Emergency Awareness Project and further our work to impact awareness of VEDS in emergency departments. Thanks to this funding, so far we have been able to:
- provide educational outreach on VEDS and access to a VEDS Continuing Medical Education (CME) and Continuing Nursing Education (CNE) course to members of major medical organizations such as the American College of Emergency Physicians (ACEP), the Emergency Nurses Association (ENA), and the American Association of Emergency Nurse Practitioners (AAENP). These organizations total more than 40,000 members. As part of this project, several emergency medicine associations were targeted for educational advertising and awareness campaigns, which have generated more than 800,000 impressions. In addition, the grant covers the cost of the CME/CNE for 100 medical professionals.
- offer free medical ID bracelets for people with a confirmed VEDS diagnosis. To date, more than 130 wearable medical IDs have been provided for members of our community.
In addition, Meg Boeglin, BSN, RN, member of our Steering Committee, and Clinical Nurse Navigator at Hoag Hospital, is providing an educational presentation at the ENA Conference at the end of September. The presentation will include information about heritable connective tissue conditions, including VEDS, Loeys-Dietz, and Marfan syndromes, with a focus on emergency presentations and recognition of these conditions.
We are looking forward to continuing these outreach and educational efforts to emergency medical professionals. For more information about the VEDS Emergency Awareness Project, contact Katie Wright, Director of The VEDS Movement, at kwright@thevedsmovement.org.
If you have a genetically confirmed diagnosis of VEDS and need a medical ID, let us know here.
