Conference Mission

To provide an opportunity for Type 3/Severe Von Willebrand Disease patients and a guest to enhance their connection with other patients, care providers, the bleeding disorder community and the community at large.

To accomplish this mission we:

1. Provided hotel accommodations and meals for a 4-day, 3-night conference for patients and a guest.
2. Gathered faculty of healthcare providers specializing in bleeding disorders including physicians, nurses, physical therapists, social workers, geneticists and health educators.
3. Educational content consisted of full assembly and small group presentations and discussions.
4. Included among the medical educational topics were: diagnosis, symptoms, treatment options, inhibitors, prophylaxis and cardiac and surgical considerations.
5. Psychosocial topics included: relationships, family challenges, emotional challenges of loss and depression, disclosure and positive coping strategies for dealing with chronic PTSD and medical trauma.
6. Provided a safe and relaxed atmosphere conducive to making connections between attendees.