Notes from the Community, July 2019

Notes from the Community

VWD Connect Foundation Annual Conference Recap
By Jeannette Cesta, VCF Executive Director

VWD Connect Foundation (VCF) held the 3rd Annual National Type 3/Severe Von Willebrand Disease Conference in Palm Beach Gardens, Florida on June 28-July 1, 2019. The conference provided a four-day patient education conference for Type 3 and severe VWD patients, along with a companion. Over 60 Type 3/severe VWD patients attended this year’s conference.

VCF is a non-profit organization established to serve the bleeding disorder community, focusing on severe Von Willebrand Disease. They provide education and connection for patients and families, and support research which will benefit the Von Willebrand Disease community.

The 2019 conference’s faculty provided educational sessions and small discussion groups. Faculty members included Christopher Walsh, MD, Mt. Sinai Hospital, New York, NY, Tung Wynn, MD, UF Health Shands Children’s Hospital HTC, Gainesville, FL; Robert Montgomery, MD, Blood Research Institute and Medical College of Wisconsin, Milwaukee, WI, Robert Sidonio, MD Aflac Cancer and Blood Disorders Center, Atlanta, GA and Beverly Schaefer, MD, WNY BloodCare Oishei Children’s Hospital, Buffalo, NY. The faculty also included experienced medical providers and health educators from a diverse group of disciplines such as physical therapy, OB/Gyn, genetic counseling, dental, HTC social workers and nurses.

Medical session topics included diagnosis, symptoms, treatments, prophylaxis, genetics, infusion techniques, nosebleeds and joint challenges. Psychosocial sessions addressed the issues of pain, depression, anxiety, disclosure, parenting, aging, transitioning and insurance. A breakfast symposium was held during the conference focusing exclusively on period management.

During the conference, an anonymous Audience Response System (ARS) was used to provide immediate feedback for attendees and faculty to make the content most relevant to the attendees’ needs and to collect patient self-reported experiences. Participating in the ARS provided a wonderful opportunity for patients to have their voices heard concerning challenges, needs and experiences in living with Type 3/Severe VWD.

For more information about VWD Connect Foundation, the conference or other Foundation activities, please contact Jeanette Cesta, Executive Director, at JCesta@VWDConnect.org or 561-373-3889.

Also in this Issue…

Notes from Joe
· A Penny for your Thoughts

Alliance Update
· Meet our New Board Members: Laurie Reger and Chris Guelcher

Legal Update
· Recordkeeping and Retention: If You Can’t Prove It; It Didn’t Happen

Payer Update
· TAP, TAP, TAP: How Healthy is your Contract Pharmacy Portfolio?


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